Brandon

C.

Programmer and Lifelong Student


Welcome to my blog

There was a point in time when I thought that filtering what I had to say was beneficial to my both personally and professionally. I have come to disagree with that initial assessment. Thus this blog contains a pretty raw view into my mind. You will find professional as well as personal posts here.

Partial Parotidectomy for Pleomorphic Adenoma Tumor Removal – My Experience and What to Expect

November 17, 2008admin453 Comments

Well that title is certainly a mouthful! I wanted to take a little time to share my experience and knowledge about a partial parotidectomy so others who are faced with the procedure can feel more comfortable about undergoing this  type of surgery.

My Background

It was about 10-12 years ago when I was in high school that I first began to feel a small lump behind my right ear near where my earlobe ends just above and to the rear of my jaw bone. It pretty much appeared out of nowhere as I didn’t really notice anything “growing” there before that time. The lump was about the size a large marble, slightly oval, but smooth and firm yet slightly movable. It wasn’t really painful but occasionally it would ache. When pressed, it would be very uncomfortable and somewhat painful. Actually, what it really felt like was just a lot of pressure in that area.

Over the next few years, I had about two or three doctors check it out and they said it was probably just an undrained lymph node, since as a teenager, I had very bad acne. I accepted this explanation until about a year and a half ago when it started to get really irritating. It seemed that the pressure was increasing and often verged on the border of being painful. So I finally went to see a specialist.

My first ENT was a total quack so I quickly ditched that guy (Robert Jacobs, if anyone is interested). My second ENT was very good. He ordered a fine needle aspiration (FNA) of the lump along with an ultrasound. The FNA is a pretty simple procedure. The doctor numbed the area before inserting another needle designed to capture some of the cells in the mass. It wasn’t necessarily painful, rather it just felt like a lot of pressure in the area. Slightly uncomfortable yes, but that’s about it.That FNA did not grab any of the cells in the mass. Unfortunately, I had to move to Arizona before any further tests could be done.

Once arriving in Arizona, I found another ENT (James Chuang) who again ordered a FNA of the mass. He suspected it was a tumor in the parotid gland. The second FNA was a bit different. The needle was much smaller and it was done in the hospital (Banner Desert). The doctor performing the procedure didn’t need to numb me since the needle was so much smaller. After inserting the needle, he slowly worked the needle back and forth a few times in order to grab as many cells as possible. This was only slightly uncomfortable. After the procedure, he immediately took the sample to the lab to confirm he got enough cells and to identify the cell type. He was back in about 10 minutes. It was positively identified as a pleomorphic adenoma tumor; a non-cancerous tumor of the parotid (salivary) gland.

The Surgery

Back at Dr. Chuang’s office, I was presented with my options: leave it alone since it was not cancerous, or take it out since there is a 20% chance of it turning into cancer. Well 20% seemed like a terribly high number when dealing with cancer so I decided to have it removed.

There are a number of complication that can happen with any surgery but when doing this type of surgery, there is the very real risk of facial nerve damage because the five facial nerves that control facial movement lie directly on/near the parotid gland (on each side of the face of course).

Notice the yellow nerves branching out across the face from near the ear

Notice the yellow nerves branching out across the face from near the ear. You can even see the parotid gland, it's that bubbly looking thing at the base of the nerves

So in other words, there was a risk that I could have partial or complete facial paralysis if anything went wrong. Again, that vs. cancer…not really an option. Dr Chuang explained that these days they use special nerve detection techniques which involve placing electrodes on the face and using a probe to locate and protect the nerves.

Regarding the procedure and hospital stay, Dr Chuang said that I would be in the hospital overnight. Not all people end up with overnight stays but he wanted to be on the safe side. Also, he said that I would have a small tube hanging out of the incision area to collect any pooled blood in the gap left by removing the tumor. The incision itself was to be almost a Harry Potter like lightning scar beginning at the front of the ear, going directly down and behind the earlobe then down the neck to just about the jaw line. The incision is supposed to be done such that scarring is minimized.

The surgery took about 3 hours because my tumor was actually growing in between two of the branched nerves and it took a bit longer than he had expected to remove. I woke up to find a small tube taped from my ear, down my neck, ending in a sort of compressed bulb like plastic container which collected any draining blood. This device was attached to my hospital gown so that it wouldn’t swing around or fall off when I walked and moved. Overall, I really didn’t feel any pain. My neck was a bit stiff but I just had the usual post-op things like sleepiness and some nausea.

The next day my doctor arrived to check the incision and remove the collection bulb thing. Removal of the tubing was rather uncomfortable but was very quick. You might think that the tube is only in there maybe an inch or so but it is actually placed in there a good three+ inches. Pulling it out was very weird and a little painful. The good thing is that once you realize that it feels uncomfortable and painful, it’s already out.

Post-Surgery and Recovery

There are a number of things that you should know about what to expect during recovery. First, your neck will be stiff. You won’t be able to turn your head very well and sleeping will be a bit of a pain. You need to try and keep your head elevated to reduce swelling and chances of bleeding. When I tried to lay flat, I felt a lot of pressure in my head and the incision started to bleed. You won’t be able to safely drive for about two weeks.

Second, you will have trouble eating. I was unable to open my mouth very wide due to the swelling in the jaw area and thus could not fit much in my mouth. Even for the things that I was able to fit in there, chewing was a pain, literally. You will want to stick with soft foods like soups, rice, pudding, jello, etc. As things heal, you will be able to chew larger and longer without pain and stiffness. It took me about two to three weeks to start eating semi-normal meals in satisfying quantities. Also, avoid bitter/sour and spicy foods that promote saliva production. On my first day home, I made the mistake of eating fish with lemon and every time I would get that sour smell or taste, the area would hurt.

Your doctor will almost certainly give you narcotic pain killers like vicodin or percocet. My advice is to use them…you will need them. It’s not super painful but it is uncomfortable enough to require pain killers for a good 3 days or so. Avoid blood thinners like ibuprofen (Advil and Motrin) as these will make it more likely that you will bleed.

Finally, a note about bleeding. Avoid everything you can that might start your wounds from bleeding. This means no straining (exercise, lifting, etc.) and blood thinners. If your incision starts to bleed, then it’s not that big of a deal but if the area starts to bulge out and or bleed through the incision you need to go back to the doctor.  This could mean that the bleeding could be internal and they may need to surgically go back in to stop the bleeding…not something you will want to do again! So take it easy for a while and heal up.

Overall, the experience was not too bad. Yes, there was pain and it was a pain in the ass but it was not the end of the world and it is definitely something that everyone can cope with. One of the other things that you should be aware of is that you may (probably will) experience some numbness in your ear and lower jaw. This is normal but takes some getting used to. They say that the feeling may come back but after three months, I’m still experiencing a good amount of numbness in the area. One of the more annoying things about the numbness is that the area will itch but you can’t feel yourself scratching so you can’t really satisfy the itch. Annoying but relatively minor.

Well I hope that my experience was helpful in helping you understand the process. Good luck and be safe.

UPDATE – 10-13-09

Hi everyone. Well this blog post is by far my most popular and since it has been slightly over a year since I had this procedure done, I though that an update would be good! Thanks to everyone who has commented about their experiences. The more people who contribute their thoughts the better.

Anyway, so its been a little over a year and there’s only a few things that I wanted to say. First of all, a lot of the numbness has gone away. I started to notice more normal feeling in the ear and jaw line after about 6 months. However, there is still some numbness and even slight tenderness closer to the incision area. Not an annoying amount…but then again I’m probably just used to it already.

The scar seems to be healing alright. It’s definitely not as noticeable as before but it’s not exactly invisible either. One thing about the healing process that I experienced was that there tends to be a lot of dead skin buildup around the incision. When cleaning your face in the shower, I would recommend taking some sort of exfoliating pad and maybe once a week or so gently scrub the area well with soap. I would imagine that this would promote healing as well since removing the dead skin should promote the creation of new skin…but I’m not sure that’s how it works. Of course, don’t do this right after the surgery. I would say wait until 3-6 months after the surgery and once the incision has well healed.

I do still notice some annoying itchiness in the area but since the numbness has begun to fade, scratching usually works…but not always.

And finally, I have noticed that whenever I eat something, be it hot or cold, spicy or bland…my cheeke sweats. Now, that may sound strange but I was told by my doctor that this is a relatively common occurrence. Apparently,  when the skin is laid back on the face during surgery, it has a tendency to heal in such a way that whenever you eat something, it triggers the sweat glands in your skin near the incision area to being to sweat. Don’t worry, it’s not saliva or anything like that, it’s just sweat, like you were eating something really spicy. It does not sweat a lot (you probably won’t be dripping) but it is enough for you to have to wipe it off with a napkin or something. Nothing hurts and it’s only in a small area right where the skin was peeled back during surgery…but it can be embarrassing if anyone notices…though that is pretty unlikely. This didn’t begin happening until probably 4-6 months after the surgery.

Well, that’s really about all the updates I have. I hope the story and comments are helpful to those of you who have or will be having the surgery. Thank you and good luck.

This article has 453 comments
  1. Angel
    December 14, 2008

    Thanks for sharing your experience with your surgery. I’m having the exact same surgery tomorrow actually 12/15. I was just doing some last minute googling when I found your blog. Everything that you described so far has been exactly the same with me. Except my tumor is in front of my ear on the side of my cheek. I’m 22 and I’m not looking forward to scars or numbness, but atleast I know I’m not the only one. Thanks again!

  2. count chocula
    December 25, 2008

    i too had this surgery! it took a while for the numbness to go away but my facial nerve is fine.. everything is great except for the scar on my neck.. looks like a vampire fed on you ;)

  3. Allan
    January 22, 2009

    I had ths surgery 6 days ago. The only pain I have left is when I chew, otherwise, my neck is still stiff, and the scar is healing nicely. No problems with the facial nerve. As advertised, the lower end of my ear is numb, along with a portion of my neck along the scar.

  4. Tash
    March 2, 2009

    Thank you so much for sharing your story. My story is exactly the same as yours in every way, I too went to other Doctors who kept telling me that it was just a gland, it may or may not go down. Your story has put my mind at ease, especially now that I am 14.5 wks pregnant and my surgeon wants to remove the tumor in 5 weeks. I was extremely concerned about the whole process and how I would recover and how it would affect my baby…. So once again, thank you for openly sharing, it is greatly appreciated.

    • Brandon
      March 3, 2009

      Your welcome. Good luck with your pregnancy and with the surgery.

  5. Keith Irwin
    May 3, 2009

    I’m having the surgery at the end of June. I, too, had one doctor after another tell me it was likely a clogged lymph node. My dermatologist discovered it after treatment for a keratosis and told me to have a surgeon check it out. He suggested that I only see an ear,nose, throat guy which I did. He diagnosed it with an FNA. He’s done hundreds of these procedures, so I’m moving forward with some confidence.

    Thanks, Brandon, particularly for the post-op information. I didn’t know I wouldn’t be driving for a couple of weeks.

  6. dorolyn
    May 7, 2009

    I had the same experience of surgery you’ve done. The only difference in my case was 2nd time around. My first surgery was in preschool and 2nd was in 3rd year college. Now Im getting back to normal because after my 2nd surgery I have facial paralysis due to trauma of my facial nerve.

    • Barb
      May 15, 2011

      What type of paralysis did you experience? Is it permanent? I am asking because I have had 2 previous surgeries where only the lumps and a small portion at the base of the gland was removed. This will be my third surgery and they will be doing a superficial parotidectomy. Do you also have any kind of concavity to the area where the gland was removed

    • Brenda
      April 9, 2013

      Hi, I just had a deep lobe parotidectomy a week ago and had trauma to the facial nerve, i can’t smile, lift my eye brow or eyelid and im concerned, were you able to regain movement? How long did it take? Did it just came back or you had some therapy or something to help it?
      Any help and advise you can give me would be very much appreciated … Thank you :)

  7. Mike
    May 9, 2009

    I just had this surgery done on May 6th by the same doctor. Mine was very large and the surgery took about four hours. Everything that is described above is exactly how you will feel when it is done. The numbness you experience is the worst part I believe.

  8. Yan
    May 30, 2009

    I just had the same surgery on May 26. I have exactly the same feelings about eating/chewing (also made a mistake of eating jalapeno), stiffness in my neck, and numbness around my incision area. Also, today I feel that the outer edge/lower end of my ear is not only numb, but also swollen/red/stiff — hopefully this is normal and will go away soon.

  9. Jennifer
    June 8, 2009

    I had mine for 2 years before the dr. decided it was not a swollen lymph node and referring me on to an ENT. Luckily my daughter had PE tubes put in so I was already familiar with this dr. and knew he was a good surgeon. I had my surgery last Monday and everything went well. What he thought would be the size of an dime came out the size of a quarter. It took 3 hours to remove. Lab results show it was a pleomorphic adenoma. I was sent home the same day without a drain. On Wednesday I began getting a sore throat, headaches, cold chills and sweats. When I finally demanded that my husband find a thermometer to check my temp it was 104. He rushed me into the ER. After 6 hours of tests they decided that I had gotten a virus and it just had really bad timing with the surgery. I was very dehydrated as well. It is now Monday and I am doing much better, minimal swelling, minimal pain, but still cannot open my mouth further than 1/4 inch wide so soup through a straw has been my best friend. I have lost 11 lbs in 7 days..but that is a good thing..lol
    Also the bottom half of my ear is completely numb.

  10. Theresa
    June 8, 2009

    I had the same same surgery ten years ago and i have it back. I was told it was a 2 percent and now i have four of them 1 in my neck 2 in the back part of the the gland(the front part was taken out)and 1 on the side of my face beside the ear. I have a catscan tomorrow so they can determin where they are going to place my facial nerves they have to remove the rest of the gland. Make sure you always just in case.

  11. Theresa
    June 8, 2009

    Make sure you check every once in awhile. Mine is still numb after 10 years in some places.

  12. jackie
    June 22, 2009

    hi thanks guys. im haveing an pleomorphic adenoma removed on the 27th july 09 and i must say the closer it gets to the date the more scard im getting . i do feel alittle better now i have read your stories thanks xxxx

  13. vasan
    July 22, 2009

    Ditto with my surgery 10 days ago for pleomorphic adenoma. I underwent total P’dectomy. Now my biggest problem is burning sensation behind my ear which was numb all these days. Teh doctoer tells me that it may be good sign of nerves recovering back. Time will tell. Good luck to all.

  14. Kylie
    August 2, 2009

    I have had the same surgery on the 15th of July 09 and instead of having a scar down my neck my surgeon used a face lift incision and you can’t even see where he’s been so that’s a big plus however I did have to go into theater twice because the first drain the put in didn’t work properly. The second time round worked a treat and I was released from the hospital after (what was suppose to be an overnight stay) 6 nights. Everything seemed to be going well the first day home but the second day the site starting to swell to back to the hospital I went where it was manually drained with a huge needle and then again 3 days later and I’ll be going back again tomorrow (one week from the last drainage) to have it done again. For some reason my saliva gland is working overtime and my body isn’t absorbing it so its just building up around my ear. Its very annoying, lots of pressure and I really want to have a decent feed like a cheeseburger or a big juicy steak. I can’t wait till it heals. Oh and by the way the big huge needle wasn’t that big of a deal because its still really numb so it didn’t hurt it just felt weird.

  15. sherry
    August 4, 2009

    I had the same surgery 10 days ago. Adenoid cystic carcinoma though. Wondered if you felt extreme pressure inside ear. Like water stuck in your ear? Numbness is annoying

    • Vivie
      September 23, 2011

      Hello Sherry,
      I had this same surgery as you and I am quite delighted to send you this email as I have also thought that I am alone in this. It was after surgery, they found Adenoid cystic carcinoma. Are you in Canada? I will be very delighted to hear from you.
      thanks, Vivie

  16. Katrina
    September 8, 2009

    I had the surgery in April – unfortunately it was a lot deeper than they were expecting and I had surgery for 4 hours. I developed an infection about a week later and had to take 2 courses of antibiotics. Still have some numbness and also some nerve pain in my ear and my neck still feels stiff at times. There is sometimes a build up of saliva and my neck feels tight but it seems to then suddenly drain into my mouth and the pressure eases. The scar looks fine – the surgeon followed what he called a crease (more like a wrinkle to me) in my neck.

    This op was rather more than I was expecting and also the recovery time seems to have taken about 4 months. I felt very tired for about 2 months and eating anything acidic was painful for about the same length of time

  17. Kirsty
    October 13, 2009

    HI. i am 21 yrs old and i am about to have this surgery. I have been to the hospital a few times and they seem very limited on giving you information on the precedure so i was really glad when i found this blog. Thank you for explaining the whole process, i havefound it vey useful and i know what to expect now. Im still scared though!

    • Haya
      October 17, 2011

      hi kirsty..hoe u doin good…i jst had dis operation n its been 3 weeks…my case was exactly like u…first doctors thought that it was on superficial lobe but wen they operated they found oiut that its a bit complicated…i also have lisp and when i smile my lower lip doesnt move like u said in ur earlier comment…im really distressed n just wanted to be sure dat it improves…rite?? im really worried about it…sometimes im all optimistic but sometimes i feel really low..just thinking if it doesnt improve…n by the way did ur doctor suggest radiotherapy…coz mine did n i dont kno what to expect…

  18. Gillian Schofield
    October 13, 2009

    Hi i am Kirsty’s Mum, I too am scared but these stories are really helpful, thanks to all, love you loads Kirstychick x

  19. jan
    October 26, 2009

    Hi having just read your comments, i feel a little easier having just been diagnosed, and waiting for the appt for a biopsy, i now feel that i am not alone,

  20. Kerry
    October 27, 2009

    Hi I had the same surgery 5 years ago and all is well. I had almost exactly the same experiences as you which is spooky. My scar still occasionally itches and some dead skin still needs to be removed via exfoliating however noone even notices the scar until I point it out to them (the surgeon was brill) The only legacy I’m left with from the surgery is my ear gets really cold when the weather temp drops, and I need to wear a hat in winter or ear muffs. I presume this is because some nerves get damaged however I do have feeling in my earlobe which I was told I would lose!! Good luck to anyone having the op and remember the human body is amazing and heals very quickly if you let it.

    • mae lynne
      April 1, 2013

      Hey Kerry,
      Do you mind giving me your Dr.s info. I am in Los Angeles, and need to find a couple of dr.s to talk too about setting up a surgery.

      Mae Lynne

  21. Kirsty
    October 31, 2009

    Hi i left a coment on the 13th October. i have now had the surgery done, 3 days ago. its not really painful but it is a pain in the bum. i cant seem to get comfy without the area feeling pressurised but im sure this will disappear. i cant chew anything so im having all my food in liquid form but its not as bad as it sounds. the area is a little swollen and i too suffered from a stiff neck for a day or 2. but that has gone now. when i came out of surgery m whole right ear and cheek were numb but within a day the feeling in half of my ear came back and i only have numbness in the lower part of my jaw. the only facial movement problems i have is half of my lower lip doesnt move, its just like you have been to the dentist, but im sure this will come back. the surgery went well an it was a little more complicated than the surgeon had thought as they had to dissect half of the tumour and then had to move my facial nerve to remove the rest. Overall i am pleased with how it has gone and wondering why i was so scared beforehand. nothing is really painful just a little uncomfortable and more a pain in the bum! but im on the road to recovery now. good look to anyone that is having the surgery.

    • Christine k
      December 1, 2012

      I just had the superficial parotidectomy 3weeks ago. I am currently experiencing a lower lip paralysis. Just want to know if your paralysis went away? I’m scared and very sad about my lips.

    • Amanda
      December 4, 2012

      Hi kirsty/Christine,

      I am now day 4 post op. Recovery is going well.
      I had some paralysis of the facial nerves but they returned to normal about 2 hours after surgery.
      As this is my second surgery I fear I may have to get it done again in the future.
      Kirsty or Christine did your facial nerves return to normal?
      i am hoping they did and wishing you girls a full recovery. Xx

  22. ed
    November 2, 2009

    i’vve just been diagnosed with this and found this page to be the most infromative as compared to anything else (inlcuding all the medical mumbo jumbo).

    Thanks alot for starting this

  23. Nathalie
    November 3, 2009

    Thank you so much for all the comments I feel more informed now.

  24. Michelle
    November 22, 2009

    I have to say thank you to all of you…..I just got the results to my biopsy…..Until I read these stories I was sooo scared. I am awaiting my appt. with the ent specialist and then of course surgery. Thank you for the heads up.

  25. cara
    November 26, 2009

    I just had my tumor removed a week ago today. I wish I came upon your site sooner. The doctors never do tell you everything. I had no idea about the difficulty I would have chewing or moving my neck (it is like whiplash). Thanks.

  26. Susan Tate
    November 28, 2009

    Thanks so much for starting the site. Had a superficial partial parotidectomy – benign lump – 8 days ago. Healing well except when I chew, even soft things, the salivary gland at the base of my jaw fills up and REALLY hurts. Docs say hot compresses and wait – any advice from others on home treatment or how long before it resolves?

    Hope everyone is healing well. Susan

    • Jennifer
      July 27, 2011

      Hi Susan,
      I had the same surgery 1 week ago and I’m having the same problems with eating and painful saliva production that you described. How long did it take for these problems to go away? Were you ever able to eat normal foods again?

  27. Tammi Moore
    December 5, 2009

    I just had surgery to remove a benign tumor on 11/25/09. Neck pain and stiffness still. I’m numb too from my lower ear, all the way down the incision. I had to wait until after the surgery to know if the tumor was benign. The FNA was inconclusive. (so don’t panic if that happens to you). My FNA hurt really bad and I was swollen for days after it. The tumor was really hard and caused a lot of pain in my face. It had wrapped around 3 nerves. No facial nerve damage from surgery. Dr. Brown from Central Park ENT in Arlington, Texas did an outstading job. I ended up having a rarer tumor than most parotid tumors, one that accounts for less than 1% of all parotid tumors. I really wish I remembered the name, but was so ovejoyed when my doc told me it was benign. I don’t know if it is just me, but I believe salivary tumors are on the rise. Seems like a lot more people are getting them. A few people in the spotlight recently had them too: Lebron James-basketball player (benign) and Adam Yauch-from Beastie Boys (malignant). I also have talked to 2 different people who said I’m the 2nd and 3rd person they knew who had a tumor there. I hope more research is done to see if cell phones and other things could be part of the cause of these increasing. I have even started using my speaker on my cell phone more .LOL

  28. Tammi Moore
    December 5, 2009

    Oh, forgot to mention. Like others, I was told I probably had an enlarged lymph node (due to ear infections). My main advice for everyone…don’t ignore the lump, even if painless…get it checked out and see another doctor if the lump doesn’t go away with meds.

  29. Brandon Ching
    December 5, 2009

    Hey Tammi,
    Thanks for contributing your details. And thanks to everyone actually! The more information we can put out there the better for everyone!

  30. Vickie
    December 6, 2009

    Thank you so much for starting this informative blog! My surgery is in 3 days and I have learned so much by reading this. I too noticed my lump around my early 20′s. Because I was given the option to leave it in- (Dr’s did not mention that it could become malignant until a month ago) The possibility of nerve damage was too much for me to handle, so I decided to wait. Now in my mid 30′s, I’m ready to do it. Thanks to your bloggers I’ve made my grocery list for soft foods and going to stock up on dvd’s. :) Thank you again- And I will up date later.

  31. Carole
    December 13, 2009

    I had this surgery in March of 09, but the tumor was in the most forward part of the glad in the middle of my cheek. They had to peel back about half of my face to get to it and remove it. i am now experiencing severe acne on the skin that was removed and on the opposite side of the face, but in the same location. The rest of my face is unaffected by the acne. HAS ANYONE ELSE EXPERIENCED THIS TYPE OF ACNE? What solutions did you come across. No one seems to know exactly what to do with it, I am on a waiting list to see a dermatologist about it. any input would be appreciated.

  32. Cindy
    December 15, 2009

    Thanks to all who have shared it makes a difference. I am having surgery on 1/8/2010 .. I had the same issues , I noticed it when I had a wisdom tooth removed , my dentist sd it was my lymph nodes , that was in august 09 after several antibiotics and steriods it was still there. I went to the hospital due to pain in the ear and back of the head. They did a cat scan and seen the growth on the parotid gland , they referred me to a specialist Dr. John Ballert * he is the most informative doctor I have ever seen. He did the Fna as well found out it was a pleomorphic adenoma and suggested for it to be removed. This is in the deep lobe on top of the facial nerve , my doctor told me that I would have trouble with my eye closing and may have to tape it shut @ night to prevent it from getting dry. Has anyone experienced this ?

    • Bonnie
      March 9, 2013

      My husband just had surgery 3 days ago and is having the same thing. How long did it take before it closed again

  33. Tammi Moore
    December 15, 2009

    Carole and Cindy, I can’t answer your questions, but I’m sure someone from a patients forum of people who have been through what we have can help. You can link to it through http://patientsforum.com/patientsforum_site_map1.htm

  34. Nathalie
    December 20, 2009

    Hi Cindy, I had mine removed on Friday my eye does not blink as much as before but the doctor said I will need cream to keep the eye moist, this nerve damage will clear in time.

  35. Nancy
    December 20, 2009

    Hi – I had my surgery on Thursday and am experiencing some swelling in my neck and around my ear – in fact it seems to be getting worse. Any ideas as to what I should do about this?

  36. Nathalie
    December 21, 2009

    Hi Nancy, Same here but I have been given Ketoprofen 200mg capsules one to be taken each day this is said to be a pain killer and it lessons the swelling. I feel more numb in the ear area but I feel this means its getting better. Can anyone tell me if I can wash my hair as have got dissolveable stitches. Thanks Nathalie.

  37. Nancy
    December 21, 2009

    Nathalie – I was told that I could wash my hair but to be careful about getting product on the incision. If it gets wet, you are just supposed to blot it dry. I am still concerned about the swelling – I can’t see the incision as the area around it is slightly red and swollen – as is my now HUGE double chin! Not much pain anymore, however. Is this normal?

  38. Nathalie
    December 22, 2009

    Hi Nancy, Plucked up the courage to wash hair yesterday but had a dry patch when I came to dry it but felt so brave afterwards. The swelling you have I don’t know if thats normal or not as I have woke up this morning feeling less swollen than usually but in more pain so have just taken paracetmol, the pain is the same as before I had the lump removed so is bearable. I slept last night for the first time in ages as I had not been able to get in to a comfortable postion, my eye is still playing up though as I need the cream to moist it, will go to doc’s today. If your still concerned about the swelling do give your doc a call and ask their advice I think its normal because we all heal differently but do see what they say. I check this sight every day so do keep writing. Good Luck Love Nat.

  39. Nathalie
    December 22, 2009

    Hi Nancy, Forgot to ask did you sleep in a sitting up postion for the first few nights as I did, this is said to help stop the swelling, I only new to do this because of Brandon Ching thank God he started this sight as its thanks to him I knew what to expect. The Doctors just don’t tell you anything. What part of the world are you in as I live in Cheshire England. Hope you don’t mind me asking.

  40. Nathalie
    December 22, 2009

    Hi Again Nancy, Just re-reading above comments, can you please read No 15 Kylie to see if its any help to you.

  41. Nancy
    December 22, 2009

    Hi Nathalie I’m in the USA and I just called the Doctor’s office to be told that the swelling is normal. I have been sleeping sitting up since the surgery. The Dr’s office said that I should call if it gets worse!

  42. Nathalie
    December 22, 2009

    Hi Nancy, So glad to hear your good news I have just come back from the hospital and they are concerned about my eye, they have noticed I can’t smile properly either so my out patients appointment has been brought forward from six weeks to two weeks to see the consultant who did my op so am quite worried about that as when I do smile I look as though its a sarcastic grin lol. They have given me drops to put in my eye to keep it moist. Keep in touch Nancy. And to all who have had the same exprience or are going to have this op done Good Luck and have a lovely festive time Love From Nathalie England.

  43. Nancy
    December 22, 2009

    Nathalie – when is your appointment? – I will keep you in my thoughts. Please let us all know how everything goes. Take care.

  44. Nathalie
    December 23, 2009

    Hi Nancy, My appointment is 11th Jan. It does seem to me the more the numbness disappears the worse the pain becomes does anyone else agree? Have been told to continue with the ketoprofen and paracetamol as I did stop for a day as was feeing spaced out but better to feel spaced out than in pain lol. Take care all Love Nat.

  45. Patty
    December 26, 2009

    You guys do not know how beneficial it was for me to stumble upon this blog today. I had the procedure done on Tuesday and was concerned about the numbness in my neck and ear and the overall healing process. I thought maybe something was really wrong. I am overjoyed to see that what I am experiencing is fairly normal and similar to everyone else’s experiences. Thanks to Brandon for starting the site and to the rest of you for sharing your stories. It has been a much needed “support group” for me. I have also been sleeping while sitting up for the past 4 nights. Certain tonight will bring the same position. :) Doctor gave me new antibiotics today to help the healing. Looks like what I need is a little more patience. Not always my strong suit.

  46. Nancy
    December 26, 2009

    Patty, I tried to sleep in a bed last night, but am still much more comfortable in a chair. The fifth day was the turning point for me – I am still sore, and if I talk too much one side of my face can’t keep up, but I do feel like I am getting better. Best wishes to everyone and thanks very much to Brandon for starting the site!

  47. Patty
    December 27, 2009

    Hi Nancy. Today is my day 5 and although I think it’s getting better, I am still completely numb in te ear and sore in the neck. I also have lots of bruising. My inner ear must be swollen because it feels as if a cotton ball has been stuffed down in it. I hope this is just a normal part of the healing process. Took a shower and washed my hair today so I am atleast feeling as if I am amongst the living. I really had no idea that this procedure was going to be as invasive as it is. I’m glad to have the growth removed but man, I can’t wait to feel back to normal!! I have been sleeping in my bed actually but I have one of those pillows with the arms rests…I have my bed pillows propped up around it. It’s been working pretty good as I seem to be getting about 10 hours of sleep per night. Thanks for sharing your update. Keep me posted on your progress and I will do the same. ~Patty

  48. Patty
    December 27, 2009

    FYI….I’m from Omaha, NE. My ENT is Dr. Michael Crawford and I really like him.

  49. Nathalie
    December 28, 2009

    Hi All, I was feeling really good yesterday until after my bath last night when a clear liquid started to run down my neck from the scar I phoned hossy and they said this was nothing to worry about but I am worried as my skull still feels bruised and I still have a headache. The runny liquid has stopped now and I have taken the last of my ketoprofen but will continue with the paracetomols. Has anyone had similar?

  50. Nathalie
    December 28, 2009

    Hi Again, Just come back from hospital the scar has been checked out and cleaned and I have been told that just behind my ear has become infected so they have given me anti-biotics which I have to take 3 times a day for 5 days.

  51. Patty
    December 28, 2009

    Nathalie….I am so sorry to hear you’re not healing as well as anticipated. I hope the new antibiotics do their thing. I get my stitches out in the morning so I am hopeful that I am over the worst hump. I’m still a pretty unhappy camper overall. Can’t wait to have feelings back. Hang in there girl and best of luck!! Keep posting. It’s great to hear others’ stories…..wishing the best for you!

  52. Nathalie
    December 29, 2009

    Thank you so much Patty, feeling a little better today but still very tired and its been well over a week now since having my op. What type of stitches do you have as mine were dissovable and glue?

  53. Cindy
    December 30, 2009

    Thank you Nathalie. I had no idea what to expect with the healing process till this blog. Thank you Brandon..
    I will let you know how things go after the surgery. Nat glad to see you are feeling better keep your head up and wishing a speedy recovery for all ..

  54. Nathalie
    December 31, 2009

    Thank you Cindy. I drove for the first time today and it was such a great feeling I felt so back to normal, I did take the youngest son with me to carry shopping bags though lol. The scab has come off the incision with a few stitches and you can hardly see that I have had an op. My neck still feels stiff and my ear is still numb I’m off all the pain killers now accept for the antibotic’s. Hope your op go’s well, if you need to know anything I will try to help. Speak soon Nat.

  55. Nancy
    December 31, 2009

    Hi all – Today marks two weeks for me and the first day that I have gone without meds. I still feel as though something is attached to the side of my head that isn’t supposed to be there, and I still am having a lot of trouble sleeping, but for the most part things are better and I finally feel like one day I will be back to normal. Fortunately I had already taken vacation time for this week, so Monday will be my first day back at work. We shall see how that goes. Glad to hear you are all improving as well – Happy New Year.

  56. Patty
    January 1, 2010

    Hi all. Well…today is the 10th day after surgery and I still cannot feel my ear and have a hard lump in the neck/cheek area. I got my external stitches (46 external, 2 layers of internal disolvable) out on Tuesday morning. That was relatively painless. The doc told me that my tumor was the size of a golf ball, flattened and elongated down to approx. my ear drum. I guess that explains why it’s taking so long to heal. He was not pleased with the progresss and gave me more meds and I need to go back next week. Needless to say, I am tired of feeling like I’m never going to be normal, but i know in my head that’s not the case. I had a fever yesterday of 100.8, low grade so I’m not everly worried. I am usually pretty optimistic but some moments it just wears on ya. I have decided that with the remaining three days before returning work, i am just going to stay tucked in, rest and continue to heal. Oh…my pathology reports are in too and all is benign so that’s awesome. Nancy and Nathalie…best of luck as you continue to heal and Cindy…I will be thinking about you and hoping all goes superbly in your procedure. I will let you know how my next appt goes. Happy New year everyone. God Bless…

  57. Margarita
    January 1, 2010

    Hi, I’am from the Netherlands Antilles Island of Curacao, I’am glad with your side.
    I will have an op. the 6th of this month.
    I’am scared, but I trust in God that He will do the op. and the healing prosess. God BLESS U ALL, TRUST HIM. He began the work He will finish it.

  58. Nathalie
    January 2, 2010

    Hi Margarita, Welcome to this fantastic site, good luck with your op on Wednesday I will be thinking of you. Hi Patty how are you feeling today you WILL get better it will just take time its only been 11days so hang on in there, staying tucked in is the best thing for you right now. I go back to work on Monday too so I’m a bit apprehensive as I work in an all girls school so there will be lots of questions asked and I know they will hug me I just hope they do not knock the area where the incision has been, I will just have to be really careful. Hi Nancy, so glad your on the mend, the way you feel is exactly the same as I do, its like my ear belongs to an elephant its just still so numb I’m still getting horrible shooting pains in and around the ear area but this does not last long I also have a 2inch piece of plastic wire stuff comming out of the back of my ear if I pull on it the incision down my neck tightens I have another half inch
    piece coming out of the front of my ear and pulling on this cause’s the same pain in the lower part of my neck, so I can only think that this wirey plastic is from the internal stitching how weird is that. Happy New Year To You All. Good Luck To Cindy And Margarita you will both be fine. Patty stay strong keep warm look after yourself I will be thinking about you, you will get there slowly but surely Love Nat.

  59. Cindy
    January 4, 2010

    Hi Nat,
    I have the same shooting pains now before the surgery in my ear, same as yours it doesn’t stay long. On a lighter note , I hope all went well for you at work today. I go for pre op tom and surgery on friday … will talk to you all after the surgery …

  60. Nancy
    January 4, 2010

    Wow, Patty, I’m sorry you are having such a difficult time of it. Thank God your growth was benign. I went back to work today – kept my hair over my ear as much as possible – as I work in a boys’ school and did not want to hear all of the remarks! I was pretty tired all day, but this evening I am actually feeling fairly well- I guess one gets used to that funny feeling on the side of one’s head! Sleeping is still difficult.
    Cindy and Margarita – best of luck to you. Nathalie – I hope all went well for you today at work.

  61. Patty
    January 5, 2010

    Hi guys. Checking in. Today was a good day. Although most of my ear is still numb and feels like it doesn’t belong..all other things are doing well. My fever has subsided. My attitude had improved :) and I am so glad I am on this side of the operation. Bottom line: it had to come out and I’m glad it’s gone!!! Sleeping is still difficult as well. This morning i woke up after a dead sleep on the injured side…face planted firmly in the mattress. That was a headache; literally and figuratively. LOL My body is trying deperately to get back to normal. In time… Every day I improve and with that, so does my optimism. Margarita…welcome and good luck. Cindy…thinking of you too. Nathalie and Nancy. Thanks for being there. you all are awesome. Night!!

  62. Diane
    January 6, 2010

    Hi Everyone. Thank you so much for this site. I am scheduled to have surgery Jan 26th. My FNA said it was a pleomorphic adenoma, as like many of you have had. I wonder how long I have had this, as I have experienced a deep itch in my right ear for several years. My tumor is right below my earlobe. As I work in the medical field the thought of surgery can be a little overwhelming (probably know too much:). It is so good to hear that many are having a good recovery, do hang in there the body has remarkable healing powers, but the nerves can take a little longer to heal, that is normal. I am having my surgery done by Dr. Osborne next to Cedars Sinai in L.A., an ENT that specializes in parotid tumors. Has anyone had him as a surgeon, or heard of him? He has a very informative website (just put the name and parotid tumor). Thank you again for all the information and support. My strength with you all.

    • mae lynne
      April 1, 2013

      I was wondering how your surgery went and if you were happy with Dr. Osborne.

      Mae Lynne

  63. Brandon
    January 7, 2010

    Hello Diane (and everyone else),
    I visited Dr. Osborne’s web site. It is very informative and thus I have no problems listing it here as another reference for visitors:

    http://www.parotid.net/

    I’m glad to see such activity on this page and to witness the support of/from people all over the world.

    Good luck to all of you.

    Brandon C.

  64. Nancy
    January 8, 2010

    hi all – just when I thought everything was getting better – I am having increased swelling behind my ear. It’s been three weeks since the surgery – and the swelling is getting worse-has this happened to anyone else?

  65. Nathalie
    January 9, 2010

    Welcome Diane, I have read the website and your in the best of hands so please don’t worry Good Luck with your op let us all know how it goes as we will be thinking of you. Hi Patty, so glad to here your feeling so much better. And Nancy please call the Doc as they will advise you on the swelling, its 3 weeks for me too and only the top half of my ear is back to feeling normal the bottom is still swollen and numb along with part of my face. The plastic wirey stuff that was sticking out from behind and in front of my ear – I was able to pull away after a few day’s, it was the internal stitching stuff lol. Am at the hospital on Monday about my eye and my half smile so will let you know how I get on speak soon Love Nat.

  66. Michelle
    January 10, 2010

    Thank you all for your comments!
    I have my surgery in February with Dr. Yates Ent. I wanted to ask anyone if they are experiencing headaches. I am getting them daily. I am on preventatives and vicodin but not completely going away and last night I got a migrane in the middle of the night. sometimes my ear hurts to like electric pains and my jaw hurts I can also tell the tumor is growing. Please give me some info. My ent says it could be from tmj but I thought I would ask you guys….

  67. Michelle
    January 10, 2010

    ps. My surgeon is from Modesto, Ca

  68. Nathalie
    January 11, 2010

    Welcome Michelle, I think the headaches are normal I think it depends on how the nerve is sitting in/on the lump if you have pain in the jaw this can cause headaches, but please get a second opinion as I’m not a Doctor. Hope this helps Good Luck with your op Love Nat.

  69. Nathalie
    January 12, 2010

    Hi All, Hope everyone is feeling better? I went to see the guy who performed my operation yesterday and asked about my eye and half smile he told me the nerve damage was temporary and would correct itself within five to six weeks. He told me the tumour was an inch in size and was benign. He also told me that in some cases Radiotherapy my be needed and he would have to check with someone else but he thought it would be unlikely that I would need it. I was also told that the lump could return in ten, twenty thirty years time. Has anyone else been told similar as I nearly fell off the chair with shock especially about the Radiotherapy. As the dumbness is dissappearing I still feel pain and its the same pain I had before the op has anyone else experienced this? Love Nat

  70. Nancy
    January 12, 2010

    That had to be a shock, Nathalie. My doctor told me to come back once a year for 7 years. Haven’t heard about the radiotherapy – what is that? I’m leaving right now for my first appointment since the surgery, so I will let you know what my doctor says.

    • Manikandan V
      November 2, 2013

      I had the surgery 7days back for the same . Since the Tumor is not in the critical location ,they easily removed the Tumor only not the Salivary Gland and advised for 3 months, 6 Months, 1 year and 5 year continuous Scan test.

      Nancy ~ Could you please let me know the current state after the treatment. Hope you will be alright.

  71. Diane
    January 14, 2010

    Hi Everyone! Just catching up on everyone’s comments. Michelle, I agree with the cause of the headaches being the position of the tumor, I have been having some discomfort (not really pain) on the right side of my cheek/head, sometimes some tingling. Always let your doctor know what is going on so they know what to check for at your appointments and if other tests are needed. Nathalie, so good to hear your nerve problem is temporary. Long ago, when I had my wisdom teeth removed I had some numbness in my lower lip, the dentist said it was because the nerve was “confused” after surgery and it took about 3-4 months to get back to normal. This may be similar to your facial nerve being ‘confused’ after surgery. Get opinions on any treatments to the area of surgery, I was told that radiation and chemotherapy could damage the facial nerve. Radiotherapy, I am not familiar with, but sounds like some kind of sound wave therapy, just make sure it can not affect the facial nerve. Well, I am going for my MRI, blood tests and EKG before my surgery Jan 26. Thank you again to everyone for your support! Talk to you soon.

  72. Margarita
    January 15, 2010

    Hi all,

    I had my operation, and as I told you that God would perform the operation on me, that’s what happened.
    God worked through Dr. Rach. Indeed a good doctor we have here on the island, he’s the only surgeon that does this kind of operation here in Curacao. He does not use the nerve detector, but he used an eye magnifier, and all the nerves remained good.
    The size of the tumor was 2cmx2cm, and it has been sent to the lab.
    The pain is gone. I did not feel much pain after the operation. They gave me paracetamol 1000mg.
    When the nurse removed the drain it did hurt a lot. I’m not eating anything that I have to chew, because chewing hurts.
    I’m happy that God allowed me to find this group, because I was aware of a lot of things.
    The doctors told me “Oh, you’re well informed on everything”
    I have a question. I noticed that two people in this group work at a school, I do too.
    Are there more people in the group that work at a school ?
    I’m wondering if maybe we are using our voices too much and wrong?
    I’m healing and I trust that the tumor is not malignant. God bless you all, and keep up the good work.

    Bye,
    Margarita

    PS: A lot of people were praying for me and the Dr.
    Prayer is good!

  73. Nathalie
    January 16, 2010

    Congratulations Margarita so glad your op was a success and how fantastic that your Doctor didn’t use a nerve detector, please let us know how you get on. Diane thank you for your kind comments I have never heard of a “confused nerve” but sounds understandable. I went to see my dentist on Wednesday and he said the pain I’m feeling is normal as the nerve has been stretched and needs time too relax back to normal. Please keep in touch Love Nat.

  74. Barbara
    January 19, 2010

    This is a very helpful discussion. Wish I had seen it earlier. I didn’t get a lot of information from my doctor or other sources. I had this operation on Dec 3, 2009. I had the lump for many years-I started to notice that it was bigger and thought it might be making me have headaches or pressure. The doctor did a fine needle biopsy and ordered an MRI. He said it was probably a benign tumor. I got the good news that it was definitely benign as I was being wheeled out of the operating room, after 6 or 7 hours of surgery. I went home the next day. I needed help for about 3 days and pain meds for 2 weeks. At three weeks, I felt at my normal energy level and I started getting mild exercise. I waited until 5 weeks before lifting weights and going swimming. When I first got home, my ear felt like a tuning fork that stuck out about 4 inches from my head. Even a little touch would make it feel like that tuning fork was being shoved into my head. Chewing food would make my ear hurt. It’s been 6 and half weeks now. The swelling is still going down gradually. Stabbing ear pains have pretty much stopped. The ear is still extra sensitive to pressure- (like my ears pop when I go up a hill in the car.) The internal stitches that haven’t dissolved yet are making a pucker by my ear and it feels like my skin has been stapled to my head there. When I turn to the opposite side, it pulls my ear! I still have the feeling that I have a cardboard ear stuck on my head.(numbness)
    All of these sensations are gradually getting better. I thought this might be a less invasive operation than it was. I have to say it feels really weird for a really long time.
    I’ve been rubbing both sides of my head and ears simultaneously to help my left side remember how it’s supposed to feel.
    The scar is still raised and lumpy but it’s not that noticeable. Seems to be settling down.
    Good luck to everyone in surgery and healing up!

  75. NancyC
    January 27, 2010

    Hi everyone,
    First I must say this is by far the most informative site. I too have been diagnosed with a pleomorphic adenoma (3.0 x 3.5cm). I see the surgeon on February 12th to decide when surgery is. My question to everyone is: Did your surgeons do fine needle aspiration biopsy (FNA) before surgery to check for malignancy or did they go right to tumor resection? I am from Toronto Canada and from the literature I have been reading, most doctors go right to resection.
    Good luck to everyone and thank you again for all of your information.

  76. Brandon
    January 27, 2010

    Nancy,
    I’m not a Dr. but I would imagine that most Dr’s will want to remove the tumor no matter if it is benign or not. It is a bit strange that they don’t want to do an FNA first but no matter the results, they would probably want to remove it anyway. If you have concerns you should certainly ask your Dr about this before the surgery. Their priority should be your comfort and safety!

  77. Diane
    January 27, 2010

    Hi All! I had my surgery yesterday on the 26th of Jan. It was a day surgery procedure, in at 8:00 and home by 12:00 noon. Overall I feel pretty good. I went back to the surgeon today to have the drain removed (he did a good job and I barely felt it coming out). They cleaned it with some betadine, I noticed that as they swabbed around my ear it was pretty numb. I figure that is normal from all the other comments. The pain is pretty minimal, I have only taken a couple of tylenol. My tumor was relatively small (almond size), the doctor said it was good to do this while it was small, less risk to other tissues. They actually did a small muscle flap to reduce the chance of a “dent” where the tumor was removed. I see the doctor in 5 more days to remove the stitches. I have a question for everyone, How are you comfortable brushing your teeth, I don’t feel like opening my mouth very wide? Thank you for everyone’s support and information. Continued good healing to all!

  78. Nathalie
    January 28, 2010

    Hi Nancy C, Yes my doctor did a FNA twice infact as the first came back inconclusive plus I had an MRI scan. Congratulations Diane you were in and out very quickly that was good as I arrived at the hospital at 7.20am operated at 9.15am went on to the ward at 12.45pm and was sent home the next day. I did not brush my teeth until day two and I could eat and drink straight away, its been 5 weeks now and I can still feel pain its still uncomforable to sleep on the side where they took the tumour out I get more headaches now than ever and its still tender, and some parts are still numb, but so glad its out.

    • jan
      June 17, 2011

      hi natalie, i am on day 5 after my op and was just wandering how long u have to sleep uprite as i have a bad back and its really painfull to try and sleep this way.x

      • admin
        June 18, 2011

        I think it was recommended for me to sleep one or two days like that but I ended up doing it for 3-4 because the pressure when I laid down all the way uncomfortable for me.

  79. Margarita
    January 28, 2010

    Hi, I had my operation the 6th of januari as I wrote before, the site started to swell and the Dr. drained it with a needle. The first time it was filled with puse. It keep swelling and I have to go to the Dr. to drain with needle every pass a day. The fluid is now clear and it is saliva. I went almost 8 times.
    I don’t know when it will stop swelling.
    I amm tired to go to the Dr. office, but my faith is still strong. I have no pain, I had to take antibiotics for a week.
    God’s blessing on you all/

  80. NancyC
    January 28, 2010

    Thank you for your responses. The reason I believe they are not doing a FNA is that the location of my tumor is too far back (and pressing on the bottom part of the cranium). I have already had my MRI and was told that there is carotid artery involvement as well. I see the surgeon on the 12th of February and I will once again discuss the FNA with him. Good luck to all of you in your surgeries and recovery.

  81. Barbara
    January 28, 2010

    I have thought a lot about Margarita’s earlier comment about how we are using our voices. I wanted to write about all the crazy symptoms I’ve had in the healing process because my doctor didn’t tell me about these things. I can see why doctors might not want to tell you all the wacky symptoms because from what I gather they recommend taking these tumors out, whether they’re benign or not- so they don’t want to scare you away from the surgery. (I had a fine needle biopsy and MRI, results not conclusive, but the doctor recommended taking it out in any case.)
    Back to how we use our voices- I don’t want to scare anybody about the surgery with this discussion of symptoms. For the most part, all the people who told me, “Relax, it’s going to be fine,” were right. It’s been fine. It gets a little better every day. I just wasn’t prepared for how weird it feels to have part of your head numb for so long and how long it would take to heal.
    I could eat right away, but chewing would make my ear hurt afterward and would make sounds more distant in my head, so I liked oatmeal and soup a lot for a while. At first, I was kind of cramming the food into a partially closed mouth. By about 4 weeks my jaw was loose enough to yawn normally.
    I had asked my doctor how I would feel after the operation because I had an all-day marathon, strenuous cooking project coming up and wondered if I should wait until after to do the surgery. My doctor said I could probably do whatever I wanted at a week after surgery. This was SO NOT TRUE for me, at one week after the surgery I was stunned that he said that. I’m sure he was trying to tell me from the best of his knowledge-I guess his other patients had an easier time. At one week, I was back to cooking dinner and doing some dishes- but I was spending most of my day resting in bed, eating soft food and taking pain meds every 4 hours. If I were advising myself on this issue, I would have said to wait 5 or 6 weeks after this operation before doing a 10-hour cooking marathon that involves lifting heavy stuff. Fortunately, the cooking job came up before the operation.
    The good news about this operation, for the people who need to have it, is that the location of the scar makes it not very noticeable. Even a week after the surgery, I had to point out where the 6 inch long incision was. It’s obvious when I point it out, but people just don’t notice it because it’s in the natural creases in front of my ear and in my neck.
    It’s been 8 weeks now. I’m back to all normal activity and rarely have any pain. The doctor said I can rub Vitamin E oil or cream on the scar. He also said I can rub the puckered place in front of my ear where stitches under the skin have not dissolved yet, to loosen it up. It’s still very tightly tacked right there. It still pulls on my ear when I turn my head, but not as much as two weeks ago. My cheek is still a little puffy and partially numb and I still have some of the foreign-object attached-to-my-head feeling with my ear, but these feelings are slowly getting better.
    Good luck to everyone.

  82. Nathalie
    January 29, 2010

    Barbara its been five weeks for me and everything you have said is so correct my scar feels so tight behind my ear, I will start to use skintensive cream for the scar tissue tonite. I do HATE touching all of the area because of the weird and strange feelings of it not being normal, my ear is the worst I call it an elehpants ear because it feels huge but does not look huge its still a little swollen though. ( The sensations I get around and in the area are a little unnerving but I’m just a big wimp). Love Nat

  83. Kirsty
    February 2, 2010

    Age 21. I first left a comment on 13th Oct 09 and again on the 31st October 09, a few days after surgery. it is now 3 months since i had the operation so i thought i would update. part of my lower face is still half numb as is my lower ear, which when i touch it feels like pins and needles, but it doesnt bother me. When i woke up from surgery i had some nerve damage which effected the use of part of my lower lip. When i spoke i had a lisp and when i tried to smile my lip stayed in the same place, so this was really distressing. but 3 months on my smile is back to normal and the lisp has gone. it is amazing how the human body, when left to rest, can heal itself. There is still a little tightness when i try to turn my head to the left but nothing compared to when i first had the op and i couldnt look left at all. The feeling round my scar has started to come back and it can be a little tender but only if i prod and poke it :-) It is sensitive when i go outside and the cold air hits my scar but overall i am really happy with the results, they have made a neat incision and the tumour was 100% benign! bonus!! :-)

  84. heather
    February 2, 2010

    hi, i just came across this site thank God, as i am now on 2nd round of antibiotics for my”just an infected /swollen lymph node! I definitely plan to go to an ent doctor as soon as i can afford to(currently no insurance/full-time student) but i also had a question to anyone out there who could let me know if had similar problem, i now have not only the hard painful lump in front of my ear,but a very painful smaller movable one up under my jaw area,same side of face! also about a week after discovering first lump and trying to rub it loose abit, i developed an infection in my eye on that side????

  85. Brandon
    February 2, 2010

    Hello Heather,
    The two lumps may be the same thing if it is a pleomorphic adenoma. From what I know, the tumor can “branch out” and start growing another mass away from the original one. I also have a smaller movable lump under my right jaw (same side as the original tumor) but after a CT and MRI, they say it is nothing (which I do not believe because I can feel and move the thing!).

    You should definitely try to see an ENT. I can only assume that you are here in the states since you don’t have coverage (sad but true). Perhaps your school has a cheap insurance plan that you can go on at least temporarily until you can determine what exactly the lump is. You don’t necessarily have to get it removed right away if it’s benign but it’s good to find out for sure.

  86. Barbara
    February 2, 2010

    Kirsty, glad to hear your nerve damage is healing. I’ve noticed my smile is slightly higher on the surgery side. I haven’t been too concerned about it so far because at 2 months I still have some swelling on my cheek and undissolved stitches under the skin are still making me feel tacked down next to my ear. So I’m hoping when that stuff settles down, the smile will even out. Sounds like you came a long way, so I’m encouraged.
    Nathalie, I like your term “elephant ear.” I’m saving that one for my list of wacky symptoms that happen after this surgery. I’ve been calling it “my dummy ear,” but I didn’t have a term for the feeling, which I also had, that the ear is far bigger than it really is. I haven’t had elephant ear for a couple of weeks! I still have a bit of cardboard ear. I keep doing a little physical therapy on myself all day long – rubbing, stroking, tapping, the good side at the same time as the numb side, trying to “tune it up” and get the feeling to come back. Don’t know if what I’m doing is helping but the numb area seems to be getting smaller and also less numb. A couple of weeks ago I went to the dentist. She suggested another physical therapy for the tight jaw – to warm up your face with warm steaming washcloths, then gently stretch it open and shut. Now my jaw is better. I went to the dentist again the other day and they had my mouth propped open for most of two hours putting a crown on, and I was okay afterward.
    Good luck, Heather. Good advice, Brandon.
    Good luck to everyone in healing.

  87. Diane
    February 2, 2010

    Well, I just saw the doctor yesterday to get my stitches out, it is 1 week today. Everything I have read here is about the same for me–my ear is totally numb and I agree, feels like an elephant ear. Also a small part of my cheek by the ear. The doctor said this should improve over the next year. I don’t seem to need anymore pain meds, it just feels tight. I had a little reaction to some topical antibiotic on my incision so had a little rash around that area, doctor just has me put some hydrocortisone cream on it. It has improved today. The pathology report said the tumor was benign, YEAH! I can move my head better and open my mouth more, still like to chew soft things (but can’t wait to have some granola cereal). It does feel weird to touch my ear because it is numb-can’t feel the warm water or heat from the blow dryer (got to wash my hair for the first time in a week:) Sounds like we are all going through about the same thing. Margarita take care of your infection and Barbara and Nathalie thanks for the update, you are a few weeks ahead of me. Keep up the good healing!!!!!!

  88. Jean
    February 2, 2010

    I just found this site – amazing! I had a total parotidectomy 25 years ago at UPenn. Surgery went well and after a few months, I felt totally healed with very little scarring. The bad news is that after so many years, my tumor has returned. It is benign (FNA) and the tumor board at Penn recommended a wait and see attitude since the second surgery is more complicated due to potential nerve damage than the first. I am a little nervous about that but will be going for MRI’s every 6 months. I had my first surgery at 36 so I guess I can’t complain at 61! My only recommendation to all would be to find the best surgeon in your area – someone who does this type of surgery frequently.

  89. heather
    February 3, 2010

    thanks for the advice brandon, i definitely will b trying to get some form of med ins and see an ent very soon. my headaches r getting worse,and today at school(im studying to be an echo sonographer tech/ultrasound of the heart)another student and i scanned the area to see if we could see anything and both are HUGE! so now im even more concerned!anyway thnx again for this site,somehow it calms me a bit.

  90. Nathalie
    February 5, 2010

    Hi All, Hope everyone is okay. just letting you know I have received an unexpected letter for an appointent to see an ONCOLOGY Doctor I think its about the radiotherapy so not happy can anyone shed any light? Thanks Nat.

  91. brittany
    February 8, 2010

    hi guys, i just found this web sight and im glad that i came upon it because i just had a fna a week ago and the doctor told me right away that it waspleomorhic adnoma (i cant spell it that well) and im so nervious about what my ent doctors is going to say because i already know that i have to get segurey done and im scared ive never had to do sergery before and im scared of what could go wrong in and out of the sergery and it is comforting that i can read all of your stories and know what to expect my ent appointment is this thursday 2/11 and im so scared for one thing i was hoping to hear that i could wait to do the sergery till after im married because im so scared that something with my nevers will go wrong and stuff so do you guys think that i could wait like 4 months to have the sergery? and i was also wanting to know if there was something other than being put to sleep for the sergery because im so scared to be put to sleep can some one help me please

  92. Nathalie
    February 8, 2010

    Hi Brittany, I think you may be getting yourself all worked up for nothing being put to sleep is no big deal I think it was good for me because I needed a good sleep, as for putting the op off for four months I think that would be no problem but this will be down to the doctor. Please STOP worrying. Good Luck with your op and best wishes for your Wedding Day Love Nat.

  93. brittany
    February 8, 2010

    thank u so much after reading this and talking to some ppl i go to skool with i feel a lil better and ill keep u guys posted thanks a whole lot nathalie

  94. Nathalie
    February 9, 2010

    Thats okay Brittany happy to help :) you will be fine on Thursday just tell the doc about your concerns Love Nat.

  95. brittany
    February 11, 2010

    well the doc said that would be fine so i think im getting the op in june i feel a lil better now that i talked to him and had a lot of questions and the docs seems like he knows whats he doing and said all of his recent ops have been good so that makes me feel a lot better to well ill lets u guys know how it went and thanks again

  96. Nathalie
    February 15, 2010

    Hi All, Just come back from seeing ONCOLOGY Doctor about radiotherapy and I do NOT need to have any how FANTASTIC, am so relieved, I do need to go back and see him in six months though. Hope everyones ok please keep in touch. Love Nat.

  97. Barbara
    February 15, 2010

    Brittany, so glad to hear that you’re feeling better about the whole thing and that you can put it off til a better time. Sounds like a lot of people have had these for years before they even knew what it was, so I thought it would be okay to wait 4 months- but everybody’s case is different – so glad to hear your doctor’s good with that.
    Nathalie, great to hear that you don’t need radiotherapy. Why did they want you to see an oncologist? Is that standard practice in Britain for this kind of tumor or was it something particular about your case? How are you feeling now?
    Last week I woke up and the first thought I had wasn’t about my funny-feeling head. This seems like progress because for the 10 weeks since my surgery, that has been my first thought on regaining consciousness every morning. I’m still waiting for internal stitches to dissolve. I’m still feeling tacked down in front of my ear, where there is a pucker in the skin from these stitches. I’ve been rubbing it, as the doctor suggested, to loosen it. When I rub it for a minute, it causes a twinge in my still-mostly-numb ear lobe. The scar continues to melt into my neck. I keep feeling the ridge going down. Feels like there may be some undissolved stitches in the scar, too. Feels like fishing line underneath the skin. So, I’m looking forward to seeing what it feels like without the stitches. The doctor said they’re made to dissolve in two- three months- so should be any time. I still have a bit of numbness- in my lower ear, and in front and in back of the ear. My cheek next to my ear, where the doc took out the tumor, is still a little puffy. It’s all gradually getting better and attracting less of my attention.
    Good luck to all. Keep in touch.

  98. Nathalie
    February 16, 2010

    Hi Barbara, I do not know why I had to see an oncologist and do not know whether it is standard practice here in Britain but will see the guy who did the op in April and ask him as it was his idea. I’m at eight weeks now and still hate touching my scar I have a large dent where the lump has been removed which I have just started to notice, my smile has come back but not fully and my eye is correcting its self slowly but surely. The dumbness around my ear face and parts of my scar are still there, I have thought of a new word which we can add to our collection its WOOD ear its not as good as Elephant ear though lol. Hope them stitches of yours dissolve soon as mine stuck out from the skin which I had to cut with scissors as it was so long but after a few days I could pull it out and another peice just came away. Good Luck and Happy Healing Love Nat

  99. NancyC
    February 16, 2010

    Hi Everyone,
    I had my appointment with the ENT on Friday and found out that the tumor has grown larger since Christmas. It is now 4.0 x 3.5 x 2.5cm. The MRI indicated low level malignancy cannot be ruled out. In the past 3 weeks I have noticed that swallowing has been quite difficult and the doctor said it is now displacing my airway slightly. Therefore surgery will be done as soon as possible. They are aiming for the first week of March. I am just frustrated with the feeling of having something stuck in my throat all of the time. They are not doing a FNA Brandon because the tumor is not appreciated in the neck as it is growing deep inside and toward the base of the cranium. He said that the surgery will be roughly 4 hours as there is carotid artery to work around as well as various nerves because of the size.

    I wish everyone well with their recovery and upcoming operations. Thank you all for your input and tips on what to look for after surgery. I will keep you posted.

    God Bless,
    Nancy

  100. Tash
    February 17, 2010

    Hi Everyone, I first left a comment to Brandon back in March 09, my surgeon was looking at taking out my tumor when I was 20 weeks pregnant but decided not to as it had not grown, he (thankfully) wanted to wait till I had my baby and established a routine. Well that time has come, I now have a beautiful little baby boy who is 6 months old next week and my operation is scheduled for march 1. I am so glad that this site has taken off like it has as only when I scheduled my op did the surgeon tell me of the possible risks and like yourself Nathalie he said that I may have to have radiotherapy to reduce the chance of it returning. I must admit I am a little fearful about the operation, but I guess that is just the unknown. I am in Australia and the surgeon I am seeing is a treasure, monitored me throughout my pregnancy and was very thorough, even trying to aspirate it as it is half fluid and half solid mass. I had my CT scan recently to locate nerves prior to surgery and apparently it is superficial to the nerve, so I am hoping it wont be as challenging as first thought to remove. So again Brandon, thank you so much for what you have begun it is apparent that you have helped so many others, and to everyone else who has taken the time to share and be there for others, you are amazing…. I will be back after the 1st to fill you in on my experience.
    Keep smiling
    Tash

  101. brittany
    February 22, 2010

    i was woundering if anyone had any problems with the sergery while they were put to sleep if u could let me know that would be great because im not putting up with the whole thing of being put to sleep because i have never had to be put to sleep before or have any sergery thanks

  102. Tash
    February 22, 2010

    Brittany,
    You said earlier that you wanted to wait till after your wedding for your surgery, speak to your surgeon about this but I dont think it should be an issue, as I initially found my lump back 7 years ago and was only last year referred to a surgeon who chose to wait till after my pregnancy, so 4 months should be fine….
    As for the anaesthtic, it is daunting and overwhelming, but one minute your counting backwards and the next minute someone is calling you name quietly to wake you up, you may feel slightly groggy, but generally thats it, (from my few experiences). I was told that with my surgery they will get me to stand and walk around as soon as I can after waking, so Im assuming it wont be too bad with the anaesthetic. Unfortunately with this operation there is no alternative to a general anaesthetic, due to having to locate nerves etc it is by far the best thing to have a general. Try not to stress to much, I know its easier said then done, my biggest concern with the op is the risk of nerve damage, but by the sounds of it everyone here has come out extremely well….
    Take Care
    Tash

  103. Kim
    February 22, 2010

    Hello,
    I recently found out I had one of these things in my face – my ENT sent me for an MRI to locate where it was, what it was, and what it was doing there. He never did do a biopsy as he says it should come out either way and it wouldn’t matter. I have not yet scheduled the surgery (I just found out on Friday). I do know he ordered a nerve monitor for it though, and a specific helper he likes, just don’t have an exact day yet.

    Thanks to you all for this information, and for sharing your stories and experiences. I didn’t know what this was or anything about the surgery, and I was so worried about the permanent possibility of all the side effects like facial paralysis that I couldn’t think straight! It is important and appreciated.

  104. Andre
    February 24, 2010

    Hey all, just have read all the comments. Much the same story of the doctors not figuring out what it is, I noticed the lump 5 years ago. I just got the call from surgeon today and I am booked to go in March 16th, after reading all this stuff I moved up my dentist appointment so I don’t have to worry about that anytime after the date. I wonder if anyone has asked to see the tumor or take it home once it has been removed, LOL, maybe that is a guy thing. Hope everyone is recovering well. Nervous about everything but every relieved that I have the date now for this, and I am grateful you all have posted comments as I feel the more information I have the better off I am as I can’t stop thinking about it now. keep you posted.

  105. Barbara
    February 24, 2010

    Andre, I asked my doctor right after the surgery if I could see what was taken out, but he said it was “gone.” They sent it to the lab while they were still operating, so that when I woke up, they told me right away that it was definitely benign. I read somewhere that they have to slice it to analyze it. I still want to ask my doctor how big it was. My doc is a man of few words-hard to get much out of him. Good surgeon though.

  106. Barbara
    February 24, 2010

    Tash, I was so glad to hear that you were able to wait until after you had your baby and got off to a good start together before having this operation. I had read your story earlier and was concerned about the safety of operating on a pregnant woman. Seems like a much better time in your life to do it now. I’ll be thinking of you March 1st.
    NancyC, lots of luck, hope your surgery goes well and will make you feel better soon.
    Brittany, I’ve had anesthesia 4 times now- first when I was 3, for tonsillectomy, then at 14 for dental surgery and twice now as an adult. Each time it’s been pretty much the same. I went to sleep literally in seconds and woke up what seemed like 5 minutes later, feeling fine. My surgery this time was about 7 hours long. The doctor had said 3 hours but when he went to trace one of the branches of my facial nerve, it went further down my neck than most people’s, and it just took longer.
    The only bad effect that I had was that I had a dry throat that night. I was drinking pitchers of water all night. The nurses and aides who work in the hospital are quite used to getting scared and nervous people through their experiences. They are really nice and if you ask them will do anything they can to make you comfortable. Even though I’d had anesthesia before, I was still worried. I always toss and turn in my sleep, and I cough during the night. What if I move during the operation? What if I cough and start choking and can’t breathe? They assured me that I would be too “out” to be moving around. They said that the anesthesiologist’s whole job is to constantly monitor your breathing and heartbeat throughout the operation. So not to worry. Hope this helps.

  107. Michelle
    February 25, 2010

    Hi Everyone!

    Well I had my surgery. I didn’t tell you guys before, that I had this tumor removed 9 years ago assuming it was just calcium deposit. Apparently it was lack of communication because checking old records it was a benign tumor then. Anyway it made my surgery a little more intense, (scar tissue). So, He goes in and finds that the tumor was completely entangled with my nerves and had grown attached to my skin. So it took 3 hours and was as big as my doctors thumb which is large! Anyway he got it all out. I went in to my follow up appointment 4 days later to remove my drain, still not knowing much because I hadn’t spoken to him yet since surgery, he asked me what is not working and I told him my upper left lip, which is the same side of the tumor. to be cont.

  108. Michelle
    February 25, 2010

    cont.
    as well as a little bit in my cheek, cant pucker or fully smile, well as I was saying this I was thinking he was going to say, “Don’t worry that will take time but will return” but no…He said that he was releived because he had to bend and move so many nerves to remove this tumor that he had thought I would have lost much more ability…. OMG! I kind of freeked. I am so thankful……I can deal with the lack of puckering and a little bit less of a smile, but droop would have killed my self esteam…. Anyway my face is sunk in like it is missing a whole section. Has anyone had this? How long did it take your face to fill back in? Besides all the fear and dangers all went well, and I’m alive…..Thank you all for your information it has definately helped me through this. I also thank GOD……

  109. Michelle
    February 25, 2010

    By the way my doctor is Allen Yates of Modesto, and I owe my life to him……He is a wonderful doctor and had several one on ones with me explaining in detail what he was going to do as well as what he did. I would definately recomment him to anyone…..

  110. Michelle
    February 25, 2010

    Andre,

    I asked to see mine too but it went to the lab…darnit! Not a guy thing or maybe it’s the tawnboy still in me…lol

  111. Michelle
    February 25, 2010

    ps. does anyone know when I can sleep horizontally with out any type of danger, like fluid not coming out or anything like that?

  112. Nathalie
    February 26, 2010

    Hi Michelle, Glad everything went well with your op. I think its down to you when you feel comfortable sleeping horizontally it took me about four nights after my op to get comfortable enough to lay flat but were all different so just do it when your ready I do not think there will be any danger. So good luck keep in touch Love Nat

  113. Michelle
    February 26, 2010

    Hi Nathalie,

    Thank you. it’s been six days today and I feel great! I am really stiff though (in my neck) the pain is definately barable now. The headaches were my biggest problem since November. I had no other problems with my tumor other than it stuck out of my face. But it didn’t start giving me headaches until they did the original biopsy. I don’t know if it were coincidental or what, but whoo hoo did my head hurt daily. I have been taking vicodin all this time and when I tried to stop I had withdrawal symptoms…that sucked so the doc said to wein myself off the vics. I was taking around 9 to 10 500′s daily now only 5 yesterday and I will do 4 today. My doc took me off work for 3 wks, to me that is a long time. How about you guys?

  114. Michelle
    February 26, 2010

    hey guys a little infor for the one’s about to go under,

    They usually ask you not to eat or drink after 12 midnight but I always still get extremely naucious and vomit atfer surgery anyway, this time I didn’t eat after 7 because someone told me to try that and it worked! Other than some pain I wasn’t naucious for the first time after surgery in my life. Oh and I haven’t had much pain problems and I think it’s because I have slept sitting up for 5 nights, which someone said to do on this blog. I love this blog!!! You guys have helped me sooooo much…. Thank you.

  115. Michelle
    February 26, 2010

    Dorolyn,

    I just read your blog again, and realized that we have more in common. We both had the surgery more than once. And we both have had facial paralysis….I am not trying to scare you guys, but if the situation calls for surgery again I would advise you to go to a well known surgeon who has delt with this many of times like I did, because i waited, I believe my surgery went better than expected….I am not bashing other surgeons with less experience but I feel that if one with less experience came across my tumor I would have lossed a lot more ability in my face….

  116. Michelle
    February 26, 2010

    ps. I waited for this surgeon to have an opening for me for 4 months. I was very impatient and in pain, but it was well worth it he did an awesome job….

  117. Andre
    February 26, 2010

    Michelle, my doctor told me I would miss a month of work, I was shocked it was that long but if that is what he recommends that is what i am going to do. I am getting a little flack about it from work but screw them… I lift things all the time in my job and they told me that my neck wasn’t needed for lifting… nice isn’t it?! I would be interested to know how much time people have missed from work as well. The nice thing is my company has a benefit plan so I can miss 6 weeks of work at full pay if the DR says I can…

  118. Andre
    February 26, 2010

    I wonder if you need to ask the doctor before the surgery if you want to see it, I am going to try that and let you know. From the ultrasound I already know it is 2.5cm (let see that is 1 inch for my US buddies) I think that sounds big but what the hell do I know….

  119. Nathalie
    February 26, 2010

    Hi Andre, I think YOU will need 6 wks off I had my op 9wks ago and am still recovering I am back at work tho but do not do any lifting which WLL put a real strain on your neck believe me. You need to take it easy for as long as you can but saying that we all heal differently Good Luck with your op keep in touch Love Nat.

  120. Michelle
    February 26, 2010

    Andre,

    Good idea about asking for the tumor pre-op! I myself do not have to strain at work I am a Medical Coder so I am just on the computer and pushing a pen, so I couldn’t imagine staying off work that long but in your case I would espeacially if your gettn paid! Good luck with your op and keep us posted.
    :) Michelle

  121. Tash
    February 27, 2010

    Hi Guys,
    Well this is it. I am getting ready to go in to hospital early tomorrow morning and although everything everyone has said is greatly informative, I am still crapping my pants…. My surgeon has told me that it will prob be about 3 hours, will seem like a split second for me but not for the people waiting…. I am scared of what they will find when they get in there even though they said it “appears” superficial to the nerve. Mine tumor is quite large 4.3 x3.2 x3.4 so will be very interesting to see how this all pans out.
    As for asking to see it, I have already been told that it will have to go to pathology as soon as it is removed to def rule out malignancy, even though a biopsy has come back benign.
    So here goes, treating myself to a lkovely meal out with my fam tonight as not too sure when I will be able to chew as surgeon said this could be a while and a liquid diet will be on the menu for a while.. (has anyone else had this?)
    Speak to you all soon……
    Tash :)

  122. Nathalie
    February 28, 2010

    Hi Tash, I was able to chew hrs after my op so hope its the same for you Good Luck please keep in touch Love Nat.

  123. Michelle
    February 28, 2010

    Tash,
    I was able to chew too but if I did eat something chewy boy did it bring on pain after…..I would not advise this for at least a week. I have been eating soup, crab, oatmeal stuff like that, I know boring but better than pain….
    My tumor was 4 inches long and 2 wide and was benign. What I haven’t read on this sight is that this could happen, probably because no one experienced this. I have a sunk in face because the tumor imbedded itself into my cheek and removing it made my face sink in…..I also lost the ability to move my upper left lip….They called me Friday and told me that it will be the longest part of my recovery for that to fill in and that though there is a possibility he doesnt believe I will be able to move my lip again…..Now understand that I have had this surgery before, 9 years ago at that time it was small. I waited to long and plus scar tissue. They said I have to be checked for this annually and believe me I will not miss an appoitment ever again!!!!! Hope all is well right now with your op, keep us posted… :) Michelle

  124. Michelle
    February 28, 2010

    Nat,

    How long has it been for you since surgery? I feel like a wimp. The more feeling I get back in my face the more tingling pain I get. Is that normal or did you experience this.
    :) Michelle

  125. Michelle
    February 28, 2010

    Nat con’t,

    It has been 8 days for me.

  126. Michelle
    February 28, 2010

    Also I am having pain to the touch where the nerves are above my eyebrow has anyone experienced this?

  127. brittany
    February 28, 2010

    hey guys i was reading something on a page saying that people could have the doc do a different knid of being put to sleep like a light dose where your not on a machine is that true and has anyone every did it? im glad to hear that all your sergerys went well and things and i hope mine does to i have it june 25th and i still have alot of question about how the sergery and recovery went like how long after sergery did you guys wake up and were you in pain and how long could you eat afterwards and is it true tthat as soon as you wake up they make you get out of bed and walk? i will have to stay the night at the hospital when i go so im thinking they are going to do a drain thing and then in the morning take it out well please if you can answer any of my questions that would be great this page helps out a lot of people

  128. Michelle
    February 28, 2010

    Brittany,

    Here is how my adventure went,

    I didn’t eat after 7pm the night before because I always get really naucious after anesthesia my friend told me to try not eating after 7pm the night before and I did and it worked! My surgery took 2 hr 45 min. He removed a tumor the size of 4 inches long 2 inches wide. I woke up they asked me if I had pain and if so how much on the pain scale I told them about a 5 so they gave me enough for my pain and it was gone, their purpose is to pain manage you and they did! As time passed they asked me if I wanted to try to drink something and I was very thirsty and said yes so I did slowly and that went fine. Then they asked me if I wanted to try to eat some jello and I did because I was starving! I got a little nausious so they gave me nausia medication and I ate more :) They told me if I was able to eat and drink I could go home as long as someone or ones could take care of me, it was my decision You see I too assumed I was going to stay in the hospital and have drain removed the next morning, but I was doing great so they sent me home with the plan to remove the drain on my follow-up appt in 5 days, usually it’s 4 days but my doc wasn’t in until 5 days later. they sent me home with a perscription for norco 1000. Anyways, I learned on this cite to plan to sleep sitting up due to laying flat causes pressure which causes pain, so my family created this blanket and pillow bed on the couch which kept me comfortable in the sit up position facing the television which I have been sleeping comfortably ever since. My follow-up appt he removed the drain, uncomfortable and weird but not painful as well as removed every other stitch, I get the rest removed this thursday exactly a week after my last appt. He told me that I can fianally wash my hair, whoo hoo, I washed it in the sink though because he said not to get the open wound wet!! He also sent me home with more pain meds this time vicodin 750 with the attempt to taper me off vicodin, (due to my severe headaches cuz of the tumor I have been on vicodins for months and have built up a tolorance) I think is why it’s taken so many to kill my pain, so you might not need as much as me. It has been 8 days since my surgery and I can feel more of my face and my inscision is looking great. I wake up in the morning remove the bandaid (with gauze like bandage rolled up underneath to absorb drainage) clean with warm water and then I apply neosporin and rebandage. Every day I feel more and more normal. So, I know it sounds scary but all in all it went quite smoothly. I don’t know if you have read all of what I have posted here, but things are not so good for me but that is because I have already had this surgery and I should have been having anual checks to see if it was coming back and I didn’t, so it grew to be extremely large plus alot of scar tissue, and now I no longer have the ability to move my upper left lip and my face is partially caved in but thankfully that part will fill back in in time. My lip only is noticable when I pucker so I am definately blessed. I hope I have helped you. You will be fine…. :) Michelle

  129. brittany
    February 28, 2010

    thank you michelle that has helped me alot and the only way i know how big mine is is they say its as big as a grape so that means not to big so im happy ive never had to have sergery so i dont know what to think and my mom says that i will be fine i have read your things you wrote and they help me a whole lot and answer my questions about this sergery im still a lil nervious but this page has helped me out a lot and the doctor is very good and ill make sure that i remind him about the check ups because i dont want this comming back but whats this whole thing about radiation or something and im glad that the only thing that is negative is the upper lip but like you i can deal with that i wont care what people think well it sounds like the sergery will go good for me even tho it is a 3 and half hour op but i feel good about it because of this page and the doctor and i will let everyone know how it went and things thank you guys so much

  130. Michelle
    February 28, 2010

    Brittany,

    I am so glad to help you. I don’t know about the radiation stuff your talking about or any other way of going under, all I know is that going under was easy. The first time I did this I was awake, though it was painless of course, it was a terrible experience because I could feel the pressure and hear every squishy thing they were doing I would never suggest doing it that way!!!! anyway talk to ya soon.
    :) Michelle

  131. Nathalie
    March 1, 2010

    Hi Michelle, Its now nearly 11weeks for me I’m still tender very numb and hate to touch anywhere around the area its such a strange feeling as the numbness wears off there is pain but its bearable I can still feel that the nerves are trying to mend themselves if you can understand what I mean, I still have to be careful how I sleep as I have sometimes woken up with an achy jaw. The pain above your eyebrows is so so normal I still feel like I’m bruised above mine. I did feel brave the other day and felt along the incision that runs down my neck and it felt lumpy but as Brabara said it may be undissolved stitches in the scar. Hope this helps Love Nat.

  132. Nathalie
    March 1, 2010

    Hi Brittany, When I woke up they asked me how I was feeling and I said in pain so they gave me a shot of Morfeen they then took me to a ward where I had to slide off one bed on to another I could of done with some help but did not get any, they then made me comfortable. I only got in to my jimjams when my visitors came to help me that evening, I did not get out of bed till the next morning. Brittany you really need to stop worring now as your op is in June so please try and take your mind off it and enjoy yourself you really are wasting your time and energy on worry your getting worked up and nervous and it just does not help and can make you ill so please stop. I worried that much I lost weight I was so miserable I could not motavate myself to do anything I hated talking on the phone hated anyone coming round and I just sat on the sofa chewing my nails so I know what its like, after my op I felt so ashamed of myself as there was just no need for it so I really and truly understand where your coming from believe me. Sorry to be so forward but I do hope this helps you. Love Nat.

  133. Michelle
    March 1, 2010

    Nat,

    OMG it has been 11 weeks!? I know exactly what you mean about feeling like they are mending how weird huh. I also feel like I ate something sour and it hurts. How long until you were off the pain meds? And when did you get back to work? I also wollowed at home stressed out about this tumor I think also because like Brittany I waited a long time to get it out but also I had some serious headaches, probably because my tumor was so big. I definately can tell its out I am in different pain now I don’t feel like my brain is frying like before….

  134. Michelle
    March 1, 2010

    Brittany,

    I you aren’t having any symptoms due to the tumor honey then you will be absolutely fine. I had little headaches the first time around and I was a little smaller than a quarter. They got it out heck of quick. You will be fine, like Nat says don’t worry go on with your days like normal. I know it’s easier said than done but in order to stat healthy you need to not be so stressed k. Talk to you soon :) Michelle

  135. Andre
    March 1, 2010

    Brittany I think it is normal to worry. I have never had surgery either and never been put to sleep – I have been worrying most about that, you know watching some movies doesn’t help at all! but I agree with Michelle I would not want to be awake for this… the sounds and smells I would think would be overwhelming. The Doctor was going on and on about how there would be very little scaring, I laugh told him I didn’t care about scares at all, just make sure I can blink after… he didn’t think that was funny, I use humor to deal with stress.

    I need a guy who has had this removed to tell me how they shaved after this surgery??? that was something I thought about this weekend as I was shaving… I’m thinking that is going to suck.

  136. Andre
    March 1, 2010

    Tash hope all is going well, best luck. Let us know as soon as you can…

  137. Nathalie
    March 1, 2010

    Hi Michelle, I was off the meds at 10 days and back at work the 8th Jan my op was the 18 Dec 09. Hope your feeling better today:) Andre I don’t think doctors laugh do they and they don’t say much either as mine were just pan faced not good really, but its brill to be able to laugh as you say its a great help in dealing with stress, just laugh I do but people do look at me funny tho cus am a bit wacko and laugh even when there’s nothing to laugh at :). Please let us know how your op goes and I hope a male who has had this op does get in touch soon as I can’t help there cus I don’t grow hair on my face and neck LoL. Good Luck Love Nat P.S Take as much time off work as you can:)

  138. Michelle
    March 1, 2010

    Nat,
    Thank you. I can’t take too much time off I already used up my pto and I don’t know how long it will take me to get disability. Today is my ninth day, should I just stop taking pain meds tomorrow? I think I’m being wimpy with the pain….It totally hurts after I eat. I did sleep laying almost flat last night though, yea! And I am feeling much better today but that tingling pain is there, yuk!
    :) Michelle

  139. Nathalie
    March 1, 2010

    Hi Michelle, Glad your feeling better. Did your doc not tell you when to stop taking the pain meds? As I was given enough for the ten days which I felt I didn’t need.

  140. Andre
    March 1, 2010

    Michelle I think pain is a different thing for each person. Don’t feel wimpy because of it, Nat might have only needed it for 10 days but gets a paper cut and you think it is the end of the world ;-) If you have the pain then take a pill. You can always increase the time between pills and see how you are doing…. did I read wrong I thought you were the one getting weeded off vicodin?? if that is the case I wouldn’t do anything unless the doctor recommends it to you… (if I read that wrong… opps, I blame Nat :))

  141. Michelle
    March 1, 2010

    Andre,

    Yup, you read it right! I’m the one needing to be weined off vicodin….It sucks….Thanks for the advise, increasing the time between pills is a great idea. I will let you guys know how that works out for me.

    Nat,
    No he didn’t give me a quit date. I will ask him on this thursday when I see him. He will probably begin the actual quitting procedure though. I had some pretty awful withdrawls when I tried right before my surgery, won’t try that cold turkey stuff ever again!!!!! My legs were twitching all over the place I have never endured that kind of thing in my entire life and I am 41. Thank you guys for your input, I really need it….
    :) Michelle

  142. Barbara
    March 1, 2010

    Hi guys,
    Here’s how the recovery timeline went for me:
    9 days hydrocodone (Norco) every 4 hours (decreasing the dose as days went on)
    11th and 12th day- transition to ibuprofen 4x day. Able to lie down on surgery ear a little while for first time.
    13th and 14th day- ibuprofen 3x per day
    2 weeks- Take pain med only when needed.
    2 1/2 weeks- stay up all day (no nap)
    3 weeks- normal energy for daily activity, play tennis first time.
    5-6 weeks- ready to lift weight (bending over and lifting weight put strain on your scar)
    I could eat right after surgery, but I noticed that doing a lot of chewing would make sound more distant in my ear, and would make my ear and bones in my head hurt 10 minutes later. So I tried to eat softer food because it was more pleasant, but I could chew something if I wanted to.
    Now it’s almost 3 months. I still have a little numbness and a little swelling and tenderness around my ear, in my lower ear and in my cheek. I still have a tacked-down place in front of my ear where the stitches haven’t dissolved, but it seems to have less connection to my neck than it used to. I still have a little extra pressure in the surgery ear, and it seems to still have trouble draining water. ( glug, glug, glug.) Otherwise, it’s feeling more normal all the time.
    Good healing everyone.

  143. Nathalie
    March 2, 2010

    Hi Michelle, How you feeling today? Cold turkey sounds real bad, the doctor will help you to cut down on the pain mends it will just take time but you will get there. You have not said where they made the incision mine is in front of my ear it then goes down behind my ear and then straight down my neck. Oh I’m 46 by the way. Love Nat :)

  144. Nathalie
    March 2, 2010

    Hi Barbara, You always make me feel so much better about my own healing I’m two weeks behind you and everything you say is so true from the numbness, tenderness, swelling and that tacked down feeling it just all feels alien but for me its been that long I have gotten used to it. My eye still stays open more than the other but no one seems to notice well maybe they do notice but they don’t say anything so thats okay. I still have to use the eye drops though. My smile is so much better than it used to be but if I talk to much I sometimes sound a little drunk but am not drunk ha honestly Love Nat :)

  145. Michelle
    March 2, 2010

    Hi Nat,

    My inscision is just as yours, sounds like it exactly! What a trip we are almost the same age, lol. I am hating this pain that feels like I ate somthing sour! yuk! I still do not know if he removed my salavary gland and won’t find out til this thurs. I too sound as if I am drunk when I talk. lol. talk to ya soon.
    :) Michelle

  146. Michelle
    March 2, 2010

    oh, and I also had the gastric bipass in 2006 so I can’t switch to ibuprofin….You are so lucky that you could Barbara…..

  147. Nathalie
    March 2, 2010

    Haha Andre, a paper cut lol shh :P Dont understand the second bit what u blaming me for? :O :) Love Nat :)

  148. Nathalie
    March 3, 2010

    Hi All, To anyone having this op I would advise you to buy some surgical spirit and cotton pads so you can clean your incision and the surrounding area, I wish I had thought of this before I had my op as mine became infected, it will remove any dry blood and it will keep the area infection free. Hope this helps Love Nat :)

  149. Judy Clarke
    March 4, 2010

    Hi to everyone. A very informative site. I am now adding my name to the list as I had the operation last Monday 1st March. Having read everyones experiences I was more than ready for the operation. The operation lasted 2hrs 45 minutes. Obviously woke up with the drain in which surprisingly had very little discharge. I was well enough to have the drain taken out the following day and discharged later that same day. The removal of the drain was pain free. I admit that I must have luck on my side as I have been able to eat reasonably well and drinking through a straw. I was told that I would have numbness of the ear lobe but unbelievably this is not the case. My mouth has dropped slightly and have numbness on my lower lip
    I do have issues trying to sleep like the majority of you but I am sure it will improve in time.
    My surgeon was Mr Menhesua at Colchester General. He put me at my ease from the get go and today he rang me at home to tell me the tumour was benign……….What a relief. Hospitals in England have had bad press of late but I can not thank all the staff and of course my surgeon at Colchester General, they were first class. Judy

  150. lisa
    March 4, 2010

    I would like to know the reoccurnce rate on these tumors. I had a benign one removed 2 years ago this past feb, it was the most common one. I think sometimes I can feel a small hard knot in front of my ear I can only feel it when I am opening my mouth. The tumor I had removed was soft…..my surgery went great no facial paralisis and you cannot see my scar at all.

  151. Andre
    March 4, 2010

    Lisa my doctor told me it was a 5% chance for it to come back…. hope that helps…. because you have had one I would think it would be easy to get an ultrasound again to check into it – of course depending on were you live that might cost you (free in Canada) but I think whatever the cost it would be worth it in the end. Could be something silly like a stitch that never dissolved….

  152. Tash
    March 4, 2010

    Hi All,
    Well its day 4 after my surgery and Im doing well. What was supposed to be a 3 hour op ended up being a 1.5 hr operation which is fantastic. I have no paralysis at all but I have a completely numb ear and partially numb cheek. My surgeon, (who is also a complete angel) was initally concerned about my eyelid as the tumor was superficial to the nerves but had actually grown so large it had stretched the nerve, but its all good. So I am wondering whether this caused headaches that I used to have behind my eye. I had a drain for 24 hours and was extremely anxious about having it removed however it was painless. My surgeon had me stay in hospital for 2 nights and he said if I wasnt up to going home I could stay longer but I felt fine, and I missed my little man. Sleeping is fine, in hospital they made sure that I was elevated slightly but I dont have to do that now. I have been allowed to shower and wash my hair and all I have to do is dry off the gauze cover with a hair dryer after. I am allowed to take off the cover tomorrow and leave the area uncovered to heal and he also said that I can moisturise or use Vit E oil on the area if I wish but feels the scarring will be minimal.
    I am in minimal pain unless I talk too much or chew, trying to eat causes nasty pain down my jaw line, along the incision. I am slightly sunken in behind my ear where the tumor was but he feels that this will fill in over time. He said that I will get all feeling back in my cheek, however my ear may take 12 months and it may only be about 70%, but when I look at what could have been I am so grateful for how it has panned out. I didnt take morphine after my op, I just had Digesic 4 hrly, never heard of them before but they worked for me, now I have just been taking nurofen, pretty much twice a day..
    My tumor came back benign which is also another blessing and because the op went so well and he managed to get it all he does not want me to have radiation therapy, but I have to see him 6 monthly for 4 years to monitor reoccurance.
    Feeling numb in the ear is quite bizarre I feel like I have had an ear transplant, it feels like something is stuck on the side of my head. and I hate it when you get itchy as you can feel it but can not satisfy the itch by scratching, very odd feeling.
    I also had to have leg compression bandages and calf stimulators on during my surgery and I also had to have them on over night for the first night after op, these were great, felt like getting a leg massage over night, quite relaxing all except for the air compressor that was running it being quite noisy, therefore I had minimal sleep my first night after the surgery. Did anyone else have these? I had them to reduce the chances of DVT.
    I am a little puffy in the cheek area, and I feel pressure in the wound area when I bend over and wow do I get tired easily..
    Has anyone had or heard of a fistula as a result of the surgery? My surgeon said that this is a possiblity but will not be permanent, It is a saliva pocket in the cheek area? Was just wondering how you would recognise the difference between a fistula to general swellling.
    Thanks everyone for all your info and support it was really comforting going into this knowing that there was so many people who you could chat to about your fears and concerns.
    Thanks guys, best of luck to everyone, xx

    • Martha
      July 23, 2012

      My husband had this surgery last Wednesday. I have the same question how do you tell if the cheek is swollen or has fluid in it? His scar is healing but area where tumor was is red, hard and slightly swollen
      Thanks
      Martha from Louisiana

      • admin
        July 23, 2012

        I think if it starts to bulge out and is kind of squishy, then it’s probably filling with fluid. Otherwise, if it’s just swollen and tender but not exactly bulging or squishy, then he is probably fine.

  153. Nathalie
    March 5, 2010

    Hi Tash, So glad everything went well for you good Luck with your healing. Love Nat :)

  154. NancyC
    March 5, 2010

    Hi Tash,
    So glad everything went well and that you are on the road to recovery.

    Judy, glad to hear you are doing so well after surgery.

    I am scheduled for the end of March so I hope all goes as smoothly as everyone’s has. I was told that I would be staying overnight in hospital for 5 days. I hope it is less. There is no place like home when trying to rest.

    All the best to everyone.

    • Nanny
      February 19, 2012

      Hi Nancy, I was diagnosed recently and having surgery on April 4th. My tumor is big 6 x 3 mm like a bean shape and pressuring the carotid and nerves. All that imply a bigger risk of nerve damage and you can imagine how worried I am.
      Anyway, I read the whole blog and I did not see anymore your comments or outcome. How you did overall? I would like to hear your story. Thanks for the input. I hope you have done great!!!

  155. Barbara
    March 5, 2010

    Hey Tash! So glad things went well for you and you’re home. Welcome to the numb ear club!
    In the hospital where I was, I think they had leg compression devices on every bed – soft white things that velcro around your legs with tubes that blow them up with air and relax every minute. These things were great! I have bad circulation and would have been miserable with all that lying in bed and no exercise if not for these things. Only problem was that whenever the air was cut off, (like I turned over in bed and squashed them,) they would start beeping. At first, hospital staff had to come in and help me. After a while I learned that if they wouldn’t stop beeping when I straightened out the tubes, I could sit up and turn the machine off and on again and it would stop beeping. I was up pretty much all night after surgery. At first I thought I was hyper-alert and cheerful because my operation had gone well and I was relieved. After hours of watching politics, news and Animal Planet, I got out my homework at 4:30 AM. I was clearly “on drugs!” Usually I fall asleep easily, in front of everything. That’s okay, I’d rather feel hospital happy drugs than the real feeling that was in my head at that point.
    Good healing, Tash. Rest up.

  156. Michelle
    March 6, 2010

    Tash,

    Congrats on your surgery going sooooo well.
    You sound awsome.

    Lisa,

    The chance of it coming back is great, I know that because everyone I know who had one years ago has told me they have returned. Scary I know…I have had it twice because of this I will do what doc says and have it checked once a year for ever.

    :)Michelle

  157. Tash
    March 6, 2010

    Thanks Guys,
    So far so good, however, I took my gauze bandage off yesterday and I have a puffy area very close to where the tumor was, pretty much right on the incision… Does anyone know if this is just normal healing/scar tissue forming. Still struggling to chew, should weigh myself lol, and still getting tired, but other than that feeling good.

    Good luck Nancy, will be thinking of you, and Judy hope you are doing well….
    Tash

  158. Judy Clarke
    March 7, 2010

    Hi everyone. My stitchers are out on
    Monday. Still feeling tired this is probably due to the relief that surgery is over. My surgeon says it should not come back but had to take the saliver gland away as the tumor was large. My surgeon had to take advice before my op as I suffer from Milroys Disease(google it) where the whole of my right side is swollen shoulder to foot. Had a bad Thursday night as the post surgery pain was high. Had to obtain further pain relief, now on codeine phospate solubles. My they are sure good. The only thing is if I take them during the day I feel like a zombie. Therefore I only take them at night so I get a real good nights sleep. Love to everyone and good luck to those whose Op is iminent. Judy xx

  159. Michelle
    March 7, 2010

    Tash, And Anyone

    I have the same type of puffy area that came about, that I had noticed, yesterday. I too am concerned and want to know if this is normal. My doc says my next apt isn’t until 2 months so I am wondering if I should call them. Anyone know what this could be?

  160. Barbara
    March 7, 2010

    Tash and Michelle, I don’t know the answer to the questions about these puffy places, but I think you shouldn’t hesitate to call your doctor’s office with any questions you have while you’re healing up. Sometimes a few minutes on the phone with a knowledgeable person can save you worry and give you the info you need to know. You don’t have to wait for your appointment to ask a question. I hate to call, myself, but I did, 3 times, and got answers to my questions.

  161. Judy
    March 8, 2010

    Hi Guys, Went to have my stitches out today. Unfortunately this has been put back 48 hours due to too much bruising and swelling, Even then they are talking about only taking every other stitch out.

  162. Tash
    March 8, 2010

    Hi Everyone,
    Apparently the puffy bit is due to a fluid build up around internal dissolvable stitches and is nothing to worry about, and will go away on its own, mine has already started to reduce, thankfully as it looked quite nasty.
    Hope your swelling goes down soon Judy.
    Tash

  163. Michelle
    March 8, 2010

    tash,

    Thank you…. I am freaking out! It’s getting bigger, now its kind of puffy behin my ear on the lower part as well. I just noticed it and can’t call until tomorrow and my doc is only in on thursdays.

    tks again,
    Michelle

  164. Tash
    March 8, 2010

    Michelle,
    I called my surgeon again as my area started to go red and he said that it is a saliva pocket, again nothing to worry about but suggested I put the hypa-fix back on, which is the sticky gauze I had on after the surgery. He said it is quite common after this surgery and said that if it gets too big or annoying that I can come in and he will syringe it, but if its OK hes happy to leave it till my next appt in 2 weeks. I have no external stitches so I am not sure if this is a result of this type of stitching as he mentioned “fluid” earlier. It is not uncomfortable and hasnt grown today, just became red, and it will not affect healing, so I hope this helps you feel a bit better.. :) I just found it a bit bizarre as I can not feel it so I was quite paranoid about infection etc…. Prob thinks Im stalking him today…. :) Let me know what they say about yours tomorrow…. Mine has a slight spongy feel to it if that makes sense…
    Tash

  165. Michelle
    March 9, 2010

    Tash,

    Mine also has a spongy feeling to it. I phoned the doc today and they are having me come in tomorrow. It was his asst. I asked her if it were normal and she said she didn’t know so I will be coming in tomorrow to see his partner because he is in only on thursdays and is really booked. I don’t know if I have internal stitches because I had regular ones. my inscision looks great other than like you a little red. I too cannot feel it so I am also concerned about infection. I personally would like for them to drain it before I go back to work, but with them doing that risks infection so if not necessary, then obviously they won’t. Thank you so much for the info, I was nervous…..

    Ps. down to 3 vicodins a day tomorrow is 2.
    :) Michelle

  166. Judy
    March 9, 2010

    Hi Tash.
    Thank you for the information on the swelling. It is good to know that there are others out there who are going through the same symptoms. Hoping to have my stitches out tomorrow. Do you have deep seated pain after eating or talking too much.
    Judyxx

  167. Tash
    March 9, 2010

    Michelle,
    Goodluck with your appt, hope it goes well. When do you go back to work? Cant remember if you already mentioned that…. Luckily Im still on maternity leave, so I have my partner on leave helping me with bubs, thankfully, as that has been hard, as he likes to touch your face etc… Its such a wierd feeling being numb, I woke up last night freaking out as I had rolled onto my left side and you dont know if you have “hurt” the incision area as you cant feel that area…
    Yay for the vicodin reduction!! Good luck

    Judy,
    Goodluck having your stitches out, hope your swelling has reduced and they are happy with your progress…. The pain I get from eating and talking too much can be quite intense and your right, deep seated… I felt my deep tissue bruising come out two days ago and it actually hurts to press on my cheek and neck underneath the numb skin, it is so hard to explain to people that although its numb, underneath still hurts and is tender, and worse when you eat and talk….
    Goodluck today
    Tash x

  168. Tash
    March 10, 2010

    Wow… We have a TV medical series here called RPA and they just had an episode which showed a lady of 29 having her pleomorphic adenoma removed. It was so interesting actually watching what they do and how they locate the nerves and preserve them througout the surgery, I now have a new found understanding for the tenderness beneath my cheek when I saw how they folded hers over to remove the tumor….. And she woke with a numb ear…. Which the surgeon said to her will dissipate within 6 months! It was so interesting to see….

  169. Michelle
    March 10, 2010

    Tash,

    What channel was that? Where are you? I would have loved to see that! Going to the doc today to see whats up with the puffiness. Talk to ya later.
    :) Michelle

  170. Michelle
    March 10, 2010

    Tash,

    I go back to work on Monday…..

  171. Michelle
    March 10, 2010

    ps,

    I’m going through the itchiness and can’t feel the scratch :( yuk….

  172. Judy
    March 10, 2010

    Hi Tash
    Everything you mentioned in your last post to me is exactly how mine feels. The nurse only took out every other stitch so I have to go back on Friday to have the rest taken out.

    Judyx

  173. Michelle
    March 10, 2010

    Hi Guys,

    Just got back from the doc. He said the swelling and spunginess is normal fluid retention and unless it gets red or grows alot more, it is nothing to worry about. He advised me to use a heating pad, but to make sure I don’t burn my skin. I also have good and bad news…Good, is that there is a great possibility that I will be able to move my lip again because I can move the corner of my mouth now and It is just a small branch of nerves that are not functioning and he believes that they will eventually. Bad news, is that the indent of my face will not completely fill back up…..And he recommended that I do not get any type of plastic surgery due to the danger of the area to the nerves….I think I would rather the lip problem verses the indent….I already fell deformed….Anyway there is nothing I can do so I must be appreciative that I do not have cancer and that I don’t have facial droop…
    :) :( Michelle

  174. Tash
    March 10, 2010

    Michelle, Im so sorry to hear your bad news, but glad to hear that your lip will get better. This situation definatley brings up all sorts of emotions, its not easy….
    I am from Australia and the show was on channel 9, called RPA. Apparently you should be able to find it on the net if you want to try to find it. RPA stands for Royal Prince Alfred Hospital.
    I have some stinging in my incision today, not too sure if thats a good thing or not.. Whether that means I have feeling coming back or its getting infected…. My partner had a look at it and said its not red or weeping so guess thats a good thing..
    Judy, glad to hear they at least started to take out your stitches… :)
    Keep smiling everyone xx

  175. Michelle
    March 11, 2010

    Tash,

    The stinging I believe is normal. I had the same thing. It doesn’t do that anymore though. Now I kind of have a pain that feels like the beginning stages of an earache, well yesterday it felt like that, today it doesn’t as much and the puffiness feels less today, Yea! Thank you for your kindness. I have a long lost cousin that lives in Australia and my aunt won’t give me his location because we don’t get along. How would one find someone over there? I am currently living in Modesto, California, but I am from San Francisco.
    Talk to you soon and hope all is well with everyone….
    :) Michelle

  176. Barbara
    March 11, 2010

    If anyone can tell me how to watch the show Tash mentioned, showing the operation, let me know, I’m interested. I found the show on the internet, (RPA,) but not the episode with the pleomorphic adenoma removal.

  177. Tash
    March 11, 2010

    Hi Everyone,
    I just had a look myself to see if the episode can be watched on the net and it can…. Go to http://www.channelnine.ninemsn.com.au/rpa. Click on watch full episode where it mentions Christina who fell off a flying fox, thats the episode :)

    Michelle, to find lost relatives in Australia, we can contact the Salvation Army, they normally put us in the right direction,hope that helps….
    My puffiness has gone down but the stinging has become worse, so I went to my Doctor this afternoon, (not my surgeon unfortunately as its too hard to get into the city as we have a stupid car race on all weekend!) but my doctor was great and said that it is not infected and it is just aggrevated by an internal stitch and should calm down soon, once the stitches dissolve, which is great as I was really paranoid about infection… So all good, now I can relax :)
    Hope this finds everyone well and on the road to recovery… Have a great weekend guys xx

  178. Tash
    March 11, 2010

    PS I hope it was ok to put the website on here as my comment is awaiting moderation :)
    Tash

  179. Michelle
    March 13, 2010

    Tash,
    I have the stinging too. Still…..I think it’s our nerves trying to find connection, atleast that is how it feels to me.

  180. Nathalie
    March 22, 2010

    Hi, Hope everyone is okay?? Love Nat.

  181. Andre
    March 22, 2010

    Hey everyone, just wanted to let everyone know how I am doing, 6 days after the surgery. face hurts way more then I thought possible, and my ear is burning non stop doctor tells me he was able to save the nerve for the ear so that is probably why. I never thought that eating would be this much an issue for me either, any amount of time chewing or talking starts my ear on fire and if I keep going the whole incision begins to burn. So oat meal and soup has been all I have been eating, good times. I have a little droop in the corner of my mouth but Doctor feels that is just temporary. I also have to say the incision is way bigger then I thought it would be. I guess because of the location of the lump he wasn’t able to follow the jaw line so it basically goes straight down from the front of my ear and is about 7 inches long, not that I am worried about scaring but just bigger then I thought. Last night what I believe is saliva started to leak out in one spot, that is sexy LOL. But over all I can’t complain I am doing well and just sleeping away the pain as much as I can. stitches come out in 4 days and I don’t see a reason they wouldn’t take them out. Keep you posted hope everyone is hanging in there.

  182. Nathalie
    March 22, 2010

    Hi Andre. So glad to hear from you I was wondering where you’d gone, so glad everything went well with your op and your on the road to recovery, if you need any goss on your healing I’m hear to help. All The best Love Nat :)

  183. Kim
    March 22, 2010

    I came across this blog and read every entry. I’m 39 and have been diagnosed with a benign Pleomorphic Adenoma. About 2 yrs ago I noticed a small lump on my jaw line just in front of my ear. I never paid to much atention to it. About a year ago I started getting what has been diagnosed now as Migrain Aura’s. There like lightning bolts that I see for about 30 minutes with mild like stroke symptoms. I went to see a neurologists who sent me for an MRI in November of 09. That is when they said I had a lump in my right parotid. In January 2010 I was sent for a CT scan which showed I had another lump on my left side. In Feb 2010 I was sent for a ultrasound on my neck. The results came back that there was actually 1 on the left and 2 on the right. I went to an ENT and she sent me for a Biopsy 2 weeks ago. During the ultrasound biopsy they found another one on the left side. So now I have 4 in total. Has anyone ever had that many. When I had the biopsy they could not give me numbing as the doctor said they were to close to the facoal nerves and he wanted me to be alert. It really hurt, they biopsied 2 of the 4. I got the results today. My ENT suggested I not have surgery due to the risk of Nerve damage however she sent me to her Senior colleague same day and he suggested I have 1 of the tumors on the left removed as he can feel that one. One of the ones on the right is 1.7 cm but it is too deep and they both suggest I leave that for now and monitor it every six months to a year. So I will have another Biopsy then to see how the other 3 are doing. I am going back to the doctors on April 1st 2010 to discuss surgery. I’m not sure how long I have had the other tumors but I know one just formed within the last month. Does anyone suggest not having the surgery and just risking they don’t grow as I was told that the chance of them becoming Malignant are rare. I am now experincing slight pain in my ear (where the deep one is) and my neck is sore at times. My ENT sia dthat could be from gringing my teeth when I sleep. I can assure you that is not the case as I have never grinded my teeth. I’m really not sure what to do. I have 4 and right now they only feel 1 should be removed. It seems you have all been through alot and I’m scared to go through that. I have a great support system but sometimes I feel they really don’t understand. Emotionally it’s exhausting. I am really sorry for the long comment but I just wanted to see if anyone else has this many and what did you do. THANK YOU FOR READING.

  184. Andre
    March 22, 2010

    Kim, everything I have read and have been told is they will not stop growing. I am very surprised that they feel they shouldn’t be removed. My Doctor told me they they would do everything they could to save the nerve but explained that as time goes on it will only become a more difficult surgery. If you google this and click on the image search you will see people that have them that are almost the size of their heads! I mean I am no doctor and over all you have to be ok with going either way. I would look around for another doctor to take a look at it. The way I feel right now I am kicking myself that I let them drag this out for 3 years I think maybe my recovery time would be much quicker. I find it strange the number you have appearing as well, I think this is worth looking for another doctor that can give another opinion, if it is the same then go with what they say, if it is different then go with the one that you are most comfortable with. hope that helps

  185. Tash
    March 24, 2010

    Hi Everyone,
    I just had my follow up appt with my surgeon, it has been 23 days since my surgery and all is going extremely well. What I thought was stinging in my incision was an internal stitch poking its way out as it didnt dissolve and he removed it today, which was completely painless. He doesnt want to see me till sept this year, so thats great news.

    Andre, I know what you mean about the pain when you eat and talk too much but mine has stopped now, it took about 2 weeks for that to go away, so hang in there, not too long now…

    Kim, I too do not understand why they will not remove yours, I agree with Andre that you should see if you can find another doc, can I ask where you are? Maybe someone on here can recommend someone for you, and then go from there…. I have not heard of anyone having more than one at a time tho, good luck and stay in touch with us, this forum really does help with all your uncertainties x
    Tash xx

  186. Andre
    March 25, 2010

    so stitches are out, hurt but it is starting to feel much better already. Doctor had some worries with the saliva dripping because there is blood with it, so I have to apply pressure on it to help it stop, which isn’t helping right now but hopefully soon. Tells me 2 weeks before it could be stopped and to come back if it isn’t, great – hope it stops sooner then that. Chewing still hurts but my ear isn’t burning anymore so that is a great relief. Hope everyone else is hanging in there.

  187. Kim
    March 25, 2010

    Andre & Tash

    Thank you for responding to my entry. When I first went to the ENT her words were there growing timors they will have to be removed. At that time I had 3 tumors – then after the biopsy they found another one. They only did a biopsy on 2 of them. The ENT said that she is not a risk taker and the surgery comes with risk so she suggested we monitor the tumors as they are benign and only have to come out when thye hit a certain size. Also she said that sometimes tumors can take 20 to 30 years to grow to 4 cm and other times they never get that big. She said I would do a biopsy every 6 months to a year to watch the growth and ensure they stay benign. She said that there is only a 3 to 5% they would become malignant. She sent me to her colleague the same day and he looked through all my results and said that the tumor on my left side is 1.7 cm but it’s a soft tumor so right now we can leave that one and monitor it. However the tumor on my left side is about 1cm but it’s hard so he says that one we need to remove. The other two on each side they say could be the tumors branching out or just some nodules. They do know no for sure as they are small.

    Do you think I should leave them in and just monitor them. I was told by a friend the longer you leave them the % gets higher for them becoming malignant. Also I would think the bigger they get the hader it is to remove. I really dont know what is the best thing to do.

    Everyone says the risk of Facial damage is scary, but the risk of not removing them is greater. I go on April 1st to discuss surgery.

    Do you think it’s normal to have 2 tumors and 2 more possibilities? Alo both my ears have started to get sore. It hurts deep down inside my ears.

    any suggestions or advise would be great.
    I admire you both and everyone on this blog for your courage.

  188. Andre
    March 26, 2010

    Kim, I would go to another Doctor, one that isn’t connected to the ones you have seen. There is a reason they work together, they see things the same way so I don’t believe you have truly have had a second opinion – that is where I would start and then go from there. I don’t think that the % changes for it to turn malignant as it gets bigger but 5% for something like that is huge….. even if they are checking ever 6 months if it turns malignant that is a 6 month jump it has had on you. I am not sure how they are doing the biopsy but here is something to think about, re-read everyone’s posts everyone that has had them removed they have sent the lump away to have it tested again, why is that if the biopsy tells them if it is malignant or not…. it is because that test isn’t 100%, my doctor told me they can’t get enough cells to test it 100% so please think of that. I am not trying to scare you but personally I would rather have some nerve damage on the face then be dead. Go see another doctor for your own peace of mind.

  189. Barbara
    March 27, 2010

    Kim,
    I would want the most experienced advice on this. Given that there is so much going on in this area-your facial nerve, your ear, etc., I can see why doctors would approach taking out four different tumors with caution. Seek out a specialist who has done many of these operations and who has a good success rate. To seek a second opinion is not to disrespect your current doctors, but just to weigh your options. Seems like different doctors have a different take on the same situation. I can tell from this blog that different doctors do the operation differently- use different stitches, different cuts. In Andre’s case, the doctor preserved his ear sensation. My lower ear is still numb 3 1/2 months after surgery, and the doctor said it may always be numb. One person said they did something (a cheek flap?) to prevent a dent where the gland was. Someone mentioned the Osborne clinics. They specialize in this surgery and are probably finding out more info on the subject than anyone. So I think this surgery is still evolving and may become even safer in the future.
    Good luck with your health and your decisions. Keep in touch.

  190. Tash
    March 27, 2010

    Kim,
    I really feel for you at the moment having such a huge decision to make, but I do agree with Andre and Barbara about seeking a second opinion and especially how it is not disrespecting your previous Drs.
    You mentioned that you were told that they can be slow growing tumors and can take up to 20 – 30 yrs to grow to 4cm, please dont believe this as gospel as my tumor was approx 1cm for about 5 years, then in 2 years, grew so fast to over 4 cms. My surgeon was mortified that I had it for so long and that it had been misdiagnosed as a palpable gland and said that the smaller they are the easier they are to remove. With all the information that he gave me aswell as the diagrams he drew to show me the surgery I was really fearful about having it removed because of the size of it, and I was angry that I missed the opportunity to have it all over with when it was small. He said the smaller the tumor the smaller the risk, however I do understand that yours are deeper….
    Please consider getting another opinion, the risk of them growing is quite large, just because you get another opinion doesnt mean you have to run with it and have the surgery, just broadens yours options.
    And as Barbara mentioned there are so many different ways the surgery can be done, so many different approached from different surgeons.
    Take Care, and good luck
    Tash x

  191. Kim
    March 28, 2010

    Hi Everyone, thank you so much for all your advise. Andre and Tash I hope you are both feeling better. I’ve taken all your advise and composed a list of all my concerns and questions to talk over with the doctor on April 1st. I’m going to ask why we are only removing one for now. I want to know exactly where the tumors are and exactly what the smaller 2 are on both sides. Dr. Crotin is the doctor. He is an Ontology doctor. He also does cosmetic surgery. Anyways the great news is, my husband and I booked a weeks holiday to Mexico (Mayan Rivera) for April 2nd. The day after the appointment so we can just get away for a bit and relax. Just forget about everything for awhile. Well at least a week. I can’t thank you enough for all your suggestions and advise it has truly really helped. This site is so important as I really feel it’s a great support group.
    Barbara thank you for your advise and I do hope your feeling comes back and that it is just temporary. I think my biggest fear is having any sort of facial damage. But it’s better then having cancer. I will let you all know what my doctor says.

    Kim

  192. Laura
    March 28, 2010

    Thanks for your story, I am on schedule for surgery April 28th 2010. I have already had the protruding knot removed, the biopsy came back subcutaneous mixed tumor (pleomorphic adenoma) so now they will go in a do a partial hopefully just partial and remove the rest of the tumor. as you said the tumor is not cancerous now but there is that 20% chance of recurrance and it may be. so the best thing is to get rid of it now. I am a little nervous about this. but I have done alot of research, and I feel I am doing the right thing. Not taking any chances. Thanks for your story, I feel a little better now.

  193. Kim C
    March 28, 2010

    I wrote a bit ago, before I had a surgery date. I had my partial parotidectomy on the 22nd of March. I had no drain installed, and all of my stitches were removed on the 26th of March. Everything is healing well, and I still have swelling and such, and a lower lip that isn’t responding, but my doctor seems to think I will get the use of it back eventually. I have a lot of numbness, and the pain is like warmth and ache, and the occasional tang when I eat.

    I have been taking videos of myself and putting them up on youtube to help people that were like me and looked for every bit of info… I hope it helps someone like this blog helped me.

    Along with my partial parotidectomy they also took some lymph nodes that were abnormal, maybe this is what’s going on with the other Kim? I am not a Doctor so I don’t know anything for sure, but maybe?

    Oh, and my Doctor thought that this needed to be taken out ASAP, even with the risks, as it can grow and become entangled in the facial nerves and cause more damage if you don’t act on it, so I would talk to another doctor. Good luck to you!

  194. Kim
    March 29, 2010

    Laura when you say you had the knot removed was that a tumor? if so why did they not take it all out at that time. Or was it because they could only take out a bit because it was tangled with your nerves. I was told that if they only take out a part of it then the risk is high that it will occur. I am with you on the nervouse part – but be strong and think positive.

    Kim C glad to hear you are doing well. May I ask how come you never had a drain, I was under the impression that everyone had a drain. However on the bright side I guess that’s a good thing. I think your right about the abnormal lymph node. I know for sure I have 2 benign tumors on each side, however the doctor said that on each side of the tumors there are 2 more lumps. And that they could just be nodules. That is one of the questions I have for the doctor. I am going to also ask him wht he chooses not to remove both – maybe they can’t do both at the same time because there on opposite sides. Anyways a couple more days and I will have more answers. Will keep in touch. Kim – hope you feel back to normal real soon. Speedy recovery.

    Kim

  195. Kim C
    March 30, 2010

    I don’t know why I didn’t have a drain, but it was never discussed beforehand, so I wasn’t expecting one. It just means that my body has to reabsorb the junk as opposed to it being drained, and I am healthy, so my body shouldn’t have any problems with that. It does mean that I had bruising all the way down to my clavicle and into the upper part of my chest from all of the junk, I don’t know if that’s normal or not.

    It has been a week since my surgery. The numbness is unnerving and annoying – I am always afraid that I will rip it open in the shower and not know about it until I see the blood. I am also getting really tired of not being able to sleep on that side as it was my favorite side to sleep on. As the numbness on my face subsides it is tender to the touch, it hurts to talk, to yawn, to sneeze, and if I eat then it still hurts to chew, just not enough to take any pain meds, I have an aversion to narcotics, and they make me nauseous.

    Kim – I don’t think they can do both sides at the same time either, they would be limiting the movement of your face far more than would be comfortable or easy to deal with, so maybe they do one side and then wait for it to heal, and then do the other side? I don’t know as I only had my left side affected by this. I know that this is unnerving information to process and you can start to fixate on it, I hope that you get more answers quickly and that everything goes smoothly for you.

  196. Andre
    March 30, 2010

    Kim C. I have about the same amount of bruising and had a drain so I don’t think that has anything to do with it, some people just bruise more I guess, I always have, you should see my arm from the IV! I am on 2 weeks today and I still can’t lie flat so I feel for you.

    I still have blood and Saliva leaking from part of the incision, at first it was just saliva but there is blood there for sure. I have another appointment in a few days for the doctor to take a look at it and see what my options are. So as soon as I eat something I have to deal with the pain of eating and then the blood and saliva dripping down my neck, or on a gauze if I put one on, it has become very annoying.

  197. Tash
    March 30, 2010

    Kim,
    Goodluck tomorrow with your surgery discussion, will be thinking of you…

    I am now in my 4th week after the surgery and doing well. I am still numb in my ear and across my cheek but I dont feel like I have been to the dentist and that the left side of my face is swollen and sticking out a mile. It is no longer uncomfortable and is fine to sleep on.. Occasionally I get nerve pain, either shooting through my ear or across my cheek but its not excruciating and Im assuming that it is the nerves healing.

    Have a safe Easter…
    Tash

  198. Kim C
    April 1, 2010

    Andre-I didn’t have anything dripping out of my incision area, it was all closed up tight, and I never had any problems with excess saliva so I got really lucky there. I do have seepage that is a clear yellowy-brown, but it is minimal, it is only on the incision and isn’t drippy or running down my neck. I still have pain when I eat and afterward it makes my jaw ache and the ‘tang’ happen. It sucks to know that I won’t be sleeping on my side anytime soon.

    Is anyone else afraid that they will be washing the incision in the shower and accidentally break it open and not know it because of the numbness? I freak out about this whenever I bathe.

    Also, has anyone noticed a ‘dent’ in their face, like a bigger hollow under the cheekbone, and maybe an altered jawline on the side of the surgery? I noticed this the other day, after the swelling had really subsided. It isn’t noticeable to friends and family says it isn’t blatant, but it’s my face, so I noticed.

  199. Andre
    April 2, 2010

    Hey Kim C, I was worried about that in the shower the first time but wanting to be clean over rode that fear, I was also told I could shower right away so that helped the worry as well. I am brave enough now to touch the incision all the time, of course with Saliva dipping it is hard not to touch to try and stop it. I have also noticed the “dent” although in-dent is probably more correct. No one has said anything to me either but I really notice it, there is no symmetry to my face now, I find it very noticeable and I don’t think that is something that will go away with time either.

  200. Michelle
    April 4, 2010

    Hi guys, long time no talk to!

    kim,

    Hello, my name is Michelle. You are the first one to mention the headaches and stroke like stuff going on. I too had these probs and this surgery, feb 20th 2010, was my second surgery. My first was 9 years ago, very small, in and out no big deal. The second, I waited way to long, really bad headaches, twitching my face felt like it was drooping and right before my surgery it did start to droop. when they finally took it out it was 4inhces long and 2 wide, which is because I waited, no matter what if you wait they will grow!!!! Trust me get a 3rd 4th opinion until you get the right opinion with in 5 months this sucker doubled in size and I lost ability to move my upper lip and I have a huge caved in face….Get them out now!!!! the smaller the better and less risk I promise you…..I don’t mean to scare you and as long as they are small and benign then there is nothing to be affraid of. They had to bend, cut move all kinds of nerves to get this huge sucker out and all because I waited….Good news I think I am getting plastic surgery, Oh and I am down to 1 norco a day I tried to stop after a couple of weeks of 1 to 2 vicodins a day and My legs were all messed up again so went back to doc and now 1 norco at night for 4 days and then 1/2 then none…..wish me luck.

  201. Michelle
    April 4, 2010

    You know until you guys said something I haven’t read anything from anyone else but you guys recently about the dent….The dent is devistating me….Thats why I want surgery. My ENT says not to too dangerous with the nerve. My PMD referred me to a specialist.

  202. Anz
    April 10, 2010

    My partial parotidectomy is scheduled for 6 July 2010. I can live with possible facial paralysis, but I never had surgery before and am scared to death of being put to sleep. Any comments?

  203. MIKE
    April 11, 2010

    I had the surgery three days ago. I had a drain which was removed 24hours after surgery. My main complaint is I feel like I have a balloon inside my ear and its putting pressure on the inside of my ear. Anyone else experienced this?

  204. Tash
    April 11, 2010

    Hi Mike,
    I had that feeling for about a day and a half after my surgery, when I spoke to my surgeon about it, he said that it was because he was pulling and pushing around in that area doing the surgery. He explained that my ear was actually clamped and squashed in the surgery, pulling it away from my cheek area, so this is what was causing that feeling, my inner ear also popped alot when I swallowed, but it stopped within two days of the surgery. If it continues, maybe chat to your surgeon just for peace of mind – hope this helps – goodluck

    Anz,
    I guess its normal to have a fear of the unknown, but honestly there is nothing to be afraid of, let them know your fears and they will talk you thru it all. Everyone is different with how the respond to a general anaesthetic, but the anaesthetist is by your side thru out the entire surgery to monitor you, so you are safe.. Goodluck to you too

  205. MIKE
    April 12, 2010

    Thanks tash for the info. It has gotten a little better today. I have my followup appointmant on Wednesday so hopefully it will be gone by then.

  206. Nathalie
    April 19, 2010

    Hi All, Just to let you know that I went for a check up today and was told that there is a 5% chance the lump could come back so I have to keep a check on it. I was then discharged which means I do not have to go back again as the consultant was very happy with my recovery, he did say that say my eye would return to normal in time as it still does not blink as much as the other one and its now been 4 months since my op. Hope everyone is healing okay and good luck to all who are waiting for their op. Love Nat :)

  207. Jhoney
    April 20, 2010

    Hi All ,
    I had the surgery ( total parotidectomy) done last week and there is no significant numbness to the face.I am happy in that aspect. At the same time I have a fear that it may reccur eventhough the chances are less .I would like to hear from you regarding the reccurence.

    Thanks
    Jhoney

  208. Anz
    April 20, 2010

    Hi Tash, thank you so much for your comment. I think I watch too much Grey’s Anatomy. I’m forcing myself to think of other things after all, July is still a long way away. These comments are all really helpfull and give me peace of mind whenever I feel panicky at the thought of having the surgery.

  209. Barbara
    April 22, 2010

    Hi All,
    I was interested in the discussion of ear symptoms after this surgery (balloon-in-the ear, Mike and Tash,) I’ve had so many weird ear feelings, I’ve wondered what in the world happened to my ear. It’s gradually getting better, but it’s been a long healing – 4 ½ months now. Interesting Tash, what your doctor said about your ear during surgery. Maybe mine was squashed too. When I first came home from the hospital, my ear felt like a hypersensitive metal rod had been inserted in my head and was sticking out about 4 inches. The slightest touch on my outer ear would feel like the rod was pushing into my inner ear. I called it, “Tuning Fork Ear.” My ear was sensitive to loud music. Occasionally my ear would start vibrating, all by itself, and I would hear a sound like hummingbird wings. The weirdest of the symptoms and stabbing ear pains mostly stopped after about 5 weeks, but I still have remnants. I still hear hummingbird wings once in a while and my outer ear, when touched, still feels connected to the inner ear. My ear started to feel normal-sized, instead of extra large, (“Elephant Ear,” Thanks, Nat!) at about 8 weeks. Another sensation I called “Ear Turning Inside Out,” where it felt like something was folding and unfolding inside my ear. Another one is Underwater/Cotton Ball Ear, where I wake up with funny sound because moisture has collected in the surgery ear, after sleeping on it. (Remedied with Q-tip.) It’s much better and more normal now, but I still feel extra pressure in the surgery ear.
    Don’t get me wrong; I’m very grateful to not have cancer or facial nerve damage. As others have said, these are the main things; these other symptoms are minor and should get better in time.
    A while back, my daughter said to stop calling it “my dummy ear.” (I called it that because of numbness.) She suggested “my beautiful awesome ear” instead. For a long time it felt like a foreign object tacked onto my head with a staple gun, but at this point, my lovely ear seems to have returned to my head, though still a bit numb. I still have a pucker in front of my ear where internal stitches are tacking my skin to my head. But, the tacked-down spot is losing connection to other internal stitching going around my ear and down my neck. It used to pull on my ear whenever I turned my head. Now it’s almost the same as the other side. Swelling in my cheek is almost gone. My family says they don’t even notice the scar or the pucker.
    The doctor said I could rub on the tacked-down place to loosen it, which I do every day. I give myself gentle finger massages around my ears and neck and cheeks, both sides at the same time, trying to make them “match up” with each other. They’re pretty well matched at this point. I still put Vitamin E on the scar. I use the steam room at the gym to stretch my neck. I do exercises and yoga that twist and cross and use both sides. I still have twinges when I rub on the scar. I still have a tender place below my ear that I need to be careful of. Lately when I rub on the stitching around my ear, it causes a cool sensation in my inner ear. Again I wonder what’s going on. I see my doctor again in a couple of months, but he doesn’t usually explain much.
    I had a funny thought: I’ve been taking special care of this numb ear and surgery scar for so long- will I miss them when they’re gone? …Not really! But it would be nice to take more “special care” of myself in general.

  210. Barbara
    April 22, 2010

    Good to hear from you Nat. You make me smile. Glad you’re doing okay. Good luck with your eye.
    Tash, I was never able to watch the RPA show where someone was having this surgery. I just get to see an Australian commercial, and then it says the video isn’t available. I watched another video of this surgery recently on one of my curious days. It was set to music! How nice.
    Hey Michelle, hope you’re well and off those pills.
    Good luck to those looking ahead to surgery. Don’t worry. Worry stresses body and mind and doesn’t help. Relax, find out what you need to know, and take good care of yourself. It sucks to have to have surgery, but my hospital experience was really positive. Great people, good care, good comfort level. Hope yours is the same.

  211. Cath
    April 25, 2010

    I had a large pleomorphic adenoma removed in 2000, they had to saw my jaw in half and I had a tracheostomy to get through the surgery as the tumour was so large. I was 22 when they found it, I’m now 32 and hoping it won’t come back.

  212. Jhoney
    April 25, 2010

    Good to hear that from you Cath

  213. Andre
    April 26, 2010

    Hey all, well back to work now, even though I don’t think I am ready but what can you do…. I thought I was summarize what happened over the last month and a half because of the “leaking” issue that no one else seems to have experienced… March 16th was the day of my surgery, I guess it went well although there was some issues with recovery and waking me up but I wasn’t able to get a clear answer on the issue, I was in the recovery room for 5 hours though. I was sent home the next day, after they removed my tube (aka the vampire is what I was calling it). 6 days later I noticed “pinky” liquid leaking down my neck, at first it was a very small amount, it got to be more and more every day, also darker red, I had the stitches removed March 25th 9 days after surgery and the doctor told me leaking was saliva and what he felt was “blood staining” from the surgery, basically blood that was in my incision from the surgery and the saliva was washing it out…. that was a Thursday, by Sunday I was leaking and bleeding so much I was soaking though a large gauze in about a hour after I would eat, it would take 3-4 hours to stop after I would eat. I called the Doctor on Monday concerned and he couldn’t see me until the following Thursday, so as the week when on the bleeding and saliva slowed down but never stops, took about 45 minutes to stop after I would eat come the Thursday appointment. Doctor took a look at it and because it was slowing down he wanted to give it another week. He did notice at that point in time that he missed 2 stitches!! (don’t they count these things!!??) it was because it was at the spot that was leaking so that “hid” the stitches I guess, he took them out and my leaking became worse at that point in time, however the bleeding stopped in a few days, so it was clear saliva at that point in time. I would eat and for an hour after I would have this saliva leaking down my neck, and with the lack of feeling on the skin I wouldn’t know until it was almost at my collar bone before I could feel it. So this keeps going until Thursday April 8th which is the next appointment, at this point in time he tells me that I need to get a sea sickness patch (actually called it a Scopolamine patch), yes you are reading that right. The main side effect of the sea sickness patch is to dry out the mouth (aka the saliva gland) so off I go to get this patch, which is pricey for the record. it is a little circle that goes just behind the ear. So I put this on and sure enough I get a dry mouth, mostly because my much needed saliva is still leaking down my neck… then I noticed I was having trouble reading, so I check into it and the other side effect of the patch is blurry vision so I wasn’t able to see close up anymore (the distance you would hold a book to read). So you put this patch on for 3 days and then you need to put a new patch on, before I can no longer read I notice that you are only suppose to use this patch for 6 days in total, so come day 5 and I am still leaking from my neck, my mouth is dry, I can’t read, and there is of course the pain and “dummy” ear all happening at the same time, I was grumpy – and I have my company calling me at least once a week asking me when I am coming back to work! I call the doctors office to ask them what to do, they tell me to use the patch for 9 days in total and then stop and let them know what happens…. so I keep going with my personal misery, on day 8 of the patch (April 16th) I leaked when I had breakfast, but when I had lunch no leak! I was so happy. I take the patch off the next day on day 9, still no leaking, I was very happy…. then on Monday it felt like my face was going to explode, the amount of pressure in my face was unbelievable, I think the saliva glad wasn’t draining into my mouth and the leak was actually stopping the pressure from building up and now that the leak stopped the saliva had no where to go…. this pain kept going for 3 days, I thought about using a drill on my face at one point in time. The morning of 4 day there was a sharp pain in my incision area and I was bleeding and leaking saliva for about 20 minutes and then it stopped, since then the pressure pain in gone so I am just back to the normal recovery pain, itch you can’t scratch, dummy ear stuff. So over all I have no nerve damage so I have to say I am lucky in the end and chalk this up as character building.

    PS shaving sucks.

  214. Kim B
    May 3, 2010

    Hi Everyone

    I do apologize for not getting back to everyone in so long as I was on vacation and had many things come up. I hope everyone is doing well. I did go see the doctor on the 1st of April. He explained that they can’t take out the tumors on both sides at the same time. He said that they are going to take out the 2 on the left side first. One is about 1cm and the other on that same side is just a little under a cm. I’m scheduled for May 26th. Got the date today. Was very excited as it was scheduled for July 5th however they bumped it up. My doctor is Dr. Crotin who is out of Centenary Hospital in Toronto, Canada. He said that it would be a day surgery (I would get out the same day) and that I should be up and about in a week. I was a little taken back by that as I had read so many of everyone’s blogs and it seemed that people were in the hospital over night and didn’t feel better for weeks. I know everyone is different, I was just a lttle confused. He makes it sound like it’s gonna be easy. He did say that best case scenario the surgery would take about 2 1/2 hours – however he would not know until he gets in there to see where the Tumors are positioned within the nerves. That was a little scary. I am nervous about the surgery but I am looking forward to having the first 2 removed. My biggest fear is waking up and having permanent facial damage. I’m honestly not sure what to expect. How much pain will I have – what to expect the first couple of days. It’s pretty nerve racking. I want to thank everyone for your support and hope everyone is feeling better and for those of you scheduled for surgery – all the best

  215. Sarah B
    May 7, 2010

    Hi everyone.

    Just wanted to let you all know, I had surgery for removel of a pleomorphic adenoma yesterday and am home today. This site has been great at keeping me informed and I feltI went into it knowing enough to feel confident I would be ok. I to was frightened I would have facial paralysis but I dont. I do have a numb ear and part of my face around the incision is numb but my surgeon says that may go away with time (the ear numbness wil prob remain but I can deal with that). I’m only 26 and didnt expect to have to go through this so young but its over with now and just have to recover and await results as to whether or not benign.

    It was no where near as bad as I thought i was going to be and although I am in pain I feel relatively ok.

    I wish you all well and if anyone wants to chat to me about it feel free

    Sarah xx

  216. Anz
    May 8, 2010

    Hi all,

    I would like to know if the site of your tumour (its location) determines where the facial paralysis will be.I suppose the size of the tumour does have something to do with it.
    Sarah B what was the size of yours?

  217. Sarah B
    May 13, 2010

    Hi, mine was behind my ear lobe and was relatively small and superficial apparantly. Think surgeon said it was about 2cm x 3cm

  218. Kim B
    May 17, 2010

    My surgery is next week. Getting a little nervous however becuase of this blog I feel like I know what’s coming. What I would like to know is how much pain are you in when you wake up. I am having a day surgery, so I’ll be home that night. Is there alot of pain? When do you actually feel okay. I was told that I would have to sleep sitting up for the first couple of days? is this correct. I’m assuming that if the pain is alot then you would probably just sleep most of the time. Question I have. Is anyone a smoker? did anyone smoke after a couple of days? Just curious as to waht to expect within the first few hours after surgery and the next couple of days. If someone could shed some light that would be great.

  219. Barbara
    May 21, 2010

    Dear Kim,
    I felt fine when I woke up after surgery, wide awake and ready for dinner. The hospital drugs worked really well to control pain. The hospital staff encouraged me to “get ahead of the pain,” and take meds as soon as I felt pain coming on, rather than wait til it’s making you feel awful. So I did and I was fine. I found that a lot of chewing would make my head and my ear and my jaw hurt, so I like soup better than salad, oatmeal better than Cheerios for a while. I took pain meds every day for 2 weeks- 9 days hydrocodone, 5 days ibuprofen. I felt good but if I tried to do too much, I would have pain even through the pain meds. That was the hint to me that it was time to lie down and rest. Then I felt fine. I stopped taking naps after 2 1/2 weeks and was up to normal energy at 3 weeks.
    My doctor made light of it as well. He said I could do whatever I wanted after a week. Not true for me. I felt more delicate than that.
    I smoked pot through an icewater-cooled bong on the fourth day. Felt okay.
    It’s almost 6 months for me now. My salivary gland action and facial nerve action seem to be okay. My ear is still a little funny. It has extra pressure and is sometimes wet inside when I wake up. The surgery site still feels funny- though it has gotten steadily better since surgery. My lower ear and a piece of my cheek in front of my ear is still a bit numb, and there is still a tender tweaky place near the scar.
    To sum up, I never felt that bad, but I’m still healing up from this surgery.
    I’m a big wimp about my looks, and I have to say it’s not bad in that aspect. The surgery side is a little different than the other side but you can’t see it from the front, and you can’t look at both sides of a person’s head at the same time, so it’s hardly noticeable even by me and my family.
    Good luck with your surgery. I’ll be thinking of you. Take good care,
    Barbara

  220. rose
    May 21, 2010

    i had my operation on the 19 of september 2008 to date i am still having server complications,
    first complication was facial nerve damage, my mouth drooped so bad on the left side i looked like a character from a horror movie! little did i know that doctor had severed my facial nerve! 2nd was the silvery gland and the constant leakage for about 8 month after surgery. the pain and discomfort especially the discomfort i still get till now.
    the electric shock feeling i get in the right side of the face. the numbness on the right side of the face and right ear lobe. a pulling feeling pretty much constantly. my doctor ran away after the surgery and it took me 3 months to track him down and find out he had sivard my facial nerve. he was rude enough to say to me i am a public patient and get over it. also that iam not young (only being 38 at the time)
    that is was not important to have my full looks anymore. i was outraged to say the least!
    one day i was sitting on my pc and i went into a music room and was listening to music then all of a sudden a felt a jolt kinda like a small electric shock! so i went an put good quality ear phones on an would listen to the music any where between 4 to 12 hours a day after a month a started to see some improvement to my facial appearance and i would feel my nerve mending every time i would play or listen to music so i knew some how this was fixing my face to i stayed with it for over a year i did regain 90% of my mouth back in that time and my confidence and low self esteem brought on by this doctors savagery surgery was was much better. as i could look at my face now in the mirror without crying.
    i believe the sound wave therapy fixed my damaged face and caused my nerves to grow at a much faster rate and almost full recovery! the doctor also told me that my mouth would not recover due to the served nerve or would at least take up to 5 years to recover at a 50 rate! wow did i prove him wrong i found that playing music with very good quality head phones caused a vibration to my nerves that produced an stimulated the growth to my facial nerves at a more expedient rate genres i would listen to where ,tech house, progressive house, d and b minimal but i found the best results came from tech house music when i felt my facial nerves having a party when ever i listened to played this kind of music! i did not suffer any hearing loss. but till now the right side of my face is still num and so it my ear lobe.
    the music only corrected my mouths appearance from a cosmetically point of view the music worked! i have taken action against the doctor to the medical board for gross Medical “Negligence !
    all i can advise you is if you having this operation make sure you ask all the questions and read all the information and make sure the surgeon has had at least done 5 or more of these operations before you and that no one else will be introduced into the operation to like a intern or training surgeon as they can make huge mistakes which cause you to lose your face or even worse your life!

  221. Kim B
    May 22, 2010

    Barbara thank you so much for letting me know a little of what to expect. I was expecting to feel alot of pain after the surgery. My doctor told me I would be off work for about 2 weeks. Good advise on the food – I also would prefer soup. I’m surprised you were feeling so good after the surgery and ready for supper. That’s encouraging.

    Rose – I’m so sorry for all you have been through. That must have been so incredibly difficult. I’m glad to hear that your doing much better. My doctor has done many surgeries with a great success rate. I do expect the numbness and some pain. Thank you for letting everyone know about listening to music becuase if anyone else is going through the same thing this may help.

    My surgery is on the 26th – wish me luck

  222. Kim B
    June 1, 2010

    Hello everyone- I had my surgery. As far as I know the doctor said it was a sucess. I was in recovery for about 6 hours. The doctors and nurses were having a had time waking me up. I was also vomitimg and had a really bad migrain. my family wanted me to stay the night but like most hospitals they wanted you out. Not sure how big the tumor was yet i went back to the doctor the day after the surgery to have the drain removed and that was extremely painful. It’s been almost a week now and I am still not eating anything solid actually I am really not eating. I’ve ;ost 6lbs allready. I just has mt first bowel movemnt today after a week, that was a little painful. The doctor sent me home with Tylenol 2. only 30 and that didnt last long I now take a Tylenol 3 when I feel pain. I fel alot of pain when I try and eat, as it feels that my ear lobe and a part of my neck is on fire. Not sure why that is. But it happens everytime. I’m scheduled to be off for 2 weeks but I.m not sure if thats going to be long enough. When does the swelling go down and your able to eat. I washed my hair today – I knew not to get the stitches wet so it was tricky, but I couldnt stand it any longer. I go back to see the doctor on the 4th for a check up. Not sure whrn the stitches are coming out. Can somebody tell me how painful that is. Anyways I want to thank everyone for writing your stories and experience because it really did help. Worse thing is I have to do this again because I have 2 more on my left side.

    thanks Kim

  223. Kim B
    June 14, 2010

    Hi Everyone

    Was hoping to hear from someone regarding the above messages. It’s been 3 weeks since the surgery. Still not back at work as I still have some swelling and mninimal pain. No need for meds anymore. Still not sleeping on the side of the surgery. Very frustrating. I wanted to ask a question. For about a week now my face where the incision is has been leaking. It really leaks when I eat – however it leaks all the time. It’s like a dripping bathroom faucet. It’s constant. The doctor said it was normal however how long does this last. My throat is still sore only on the side of the surgery. I’m eating alot better now but still not eating normal as it still hurts at times. But at least I can eat more then just soup. I go back to the doctor tomorrow for another check up. My biopsy results should be back now. I still have to turn my whole body when I turn my neck. I do have a indent in my cheek. The swelling has gone down however there is still quite a bit. The constant leaking drives me crazy. Anyone had this.

  224. Brandon C.
    June 14, 2010

    Hey Kim,
    What kind of leaking are you experiencing? Is it sweat, saliva, or something else? I still get sweat on my cheek (not the incision) when I eat but that’s about it; it’s not constant. I think it would matter if it was leaking from the incision or not. I think it might be possible that it’s just still draining s long as its’ not blood that is leaking out. Let us know what the doctor tell you.

    B

  225. C
    June 16, 2010

    Hi Sarah B (post 217),

    I find you post very reassuring, as I have to have a superficial parotidectomy in a few weeks, just a month before my wedding. I am so nervous it is unbelievable, and worried sick that I will have facial paralysis temporarily, although the Consultant has assured me that it is unlikely in my case and I will be fine within 2 weeks due to it’s location.

    I am not really bothered by scarring, as I have long hair, but just very worried about time scale

    Any help would be great

  226. caty
    June 20, 2010

    Dear Kim I’m gonna be 60 in this Oct. I had the pleomorphic adenoma remove in1994, and it come back again, I did try traditional Chinese medicine and acupuncher

  227. caty
    June 20, 2010

    but nothing help so I’m gonna get second surgery again my Dr. said you can wait until it grow to 4 cm+ so don’t worry may be by that time they have high tech. to do it

  228. Debbie
    June 22, 2010

    I had the same surgery on May 25, 2010… it has now been 4 weeks, still have a little pain when chewing some foods, numbness, scar is healing good. My doctor found tumor by accident when checking me for TMJ, just so glad he found it before cancer could have set in…praying it doesn’t come back. I wished I had found your insight 4 weeks ago. :)

  229. Sai kiran
    June 24, 2010

    i too had my surgery done on 22/06/2010.
    really it was a strange experience. i have a tube attached to my ear still n it will be removed after 9 days as said by doc. thank u 4 creating dis blog n sharing ur experience… it whould be wonderful if u chat wit me abt ur experience n all.. my id is kiransai14@yahoo.com.. thank u once again…..

  230. Sai kiran
    June 24, 2010

    sorry it is 3 days not 9 days

  231. Jason
    June 24, 2010

    Hi all, this is a great site and I wish I had found it prior to my prostatectomy. Just like you Brandon, I had mine in the same locations just behind my right ear. I noticed it about a year ago and a FNP said it was probably a swollen gland. The FNP said it was probably not a tumor because it was movable lol, good thing it turned out to be benign.

    Anyway, I unfortunately had complication from the surgery. My doctor was honest and stated the Surgical Nurse had accidentally hit my facial nerve when using the separators (sorry not sure what those little fork things are called) . This caused severer facial nerve paralysis, but I have a 98% recovery so my doctor said, but could take up to a year. I would be curious to hear from someone who had nerve paralysis and how long it took to recover from. I would be happy if I could just close my right eye at will. To all who are expecting the procedure don’t worry apparently (unless the tumor goes into the nerve) there is very little to no risk that you will have any paralysis. Once the surgeon got in there he noticed the tumor was larger than the marble that was felt behind the ear and had to make a larger incision. Apparently, it was shaped like a dumbbell and had a gulf ball size end deeper in gland. I am glad I had it removed and given the 20% if cancer forming I recommend doing the operation. Beside the rare complication I had, the surgery really is not as bad as I thought before I had it. Good luck all.

    Thanks again for the blog Brandon and to all who posted with the helpful comments.

  232. Tash
    June 25, 2010

    Hi Everyone,
    It is now 4 months since my surgery and I thought I would give an update – I must admit I feel extremely blessed with how it has all gone and with my recovery. At this stage I have no signs of Freys syndrome which is a common side effect of the surgery, where close to the incision area you can sweat at times. I was completely numb along my cheek and my ear was completely numb aswell. I have just regained feeling in my cheek, however my ear is still numb and sometimes I get shooting pain through it, Im hoping that is the nerves repairing. The most bizarre thing that I am experiencing tho is that when I scratch my scar, I get a tingling sensation in my ear – very odd. My scar still has some pinkish tones to it, but my surgeon was an absolute master and I am grateful for the internal dissolving stitches that I had as I feel that it made all the difference in the healing. I wish to thank everyone who I have spoken to in the past for all their support as it was extremely helpful and reassuring and I also wish everyone recovering a speedy recovery. Listen to your bodies, everyone has their own unique experience and your body will let you know what you need to recover.
    Tash

  233. Jay
    June 26, 2010

    Good to hear Tash! Did any of you have a stinging pain in your jaw when you first eat? I have this everytime I eat for about the first 10-20 seconds then it goes away.

  234. caty
    July 10, 2010

    Hi all I’m gonna have my second surgery sometimes in Auguster I have left para-pharyngeal space polymorphic adenoma it’ gonna have a big side effect ion then before I don’t if any of you have a reassurance tumor I’m really scare I am try to find different way to do it in stead of transitional operation IDO NEED SOME ADVICE IF ANY OF YOU HAVE THE SOME SITUACTION LIKE ME PLEASE TELL ME

  235. Sarah
    July 10, 2010

    Hi C (post 226)

    Bit of reassurance for you:-
    I went to a black eyed peas concert in the standing area so lots of jumping and dancing, 3 weeks after my op and I was fine. Just had to make sure noone bumped me!!

    Sarah x

  236. Anz
    July 19, 2010

    Dear all

    I had my surgery on 6 July and everything went well. for the past few months I dreamt of writing exactly this on the blog. yes, it was a pleomorphic adenoma and I was quite worried for a while while waiting for the results of the biopsy. I stayed overnight in hospital and the painkillers did the trick. The drain was removed, not an entirely comfortable experience, after 24 hours in the dr’s surgery. My neck is still quite stiff which makes driving impossible. I have also noticed that excessive saliva is produced while I am in a relaxed state or sleeping. I was very shocked to notice that my hair was shaved above my ear and down the neck, but of course it is not the worse thing that could have happened. One other thing is that I was stitched up quite badly: the surgeon cut across my ear lobe and now I have a piece of extra skin around and behind my earlobe, I hope this will flatten out and that it might just be swelling. i thank the Lord that I have no facial paralysis although the docter told me that he had to peel part of the tumour away from the nerve that leads to the eye.

    thanks to all for your words of advice – I will keep in touch.

  237. anita
    July 29, 2010

    I’m going to have surgery on 13 Sept. for the removal of a pleomorphic Adenoma tumor. I’m a dental hygienist and found it one day at work when I was bored. Knew right away something was wrong. Went to the doc, said to watch it for alwhile. Finally went to an ENT doc. Did a fine needle biospy, and there you are. Not looking forward to the surgery. Pretty freaked in fact. The tumor is not that big yet, but I’m totally freat, because I know what can happen. Should I cut my hair for this or what? How much pain with be involved after surgery Freaking out here
    the girl who would rather take an ass whipping that go thru this. Any advice given who be good.
    Any good Dr. in Fairbanks Alaska let me know A

  238. Matilde
    August 6, 2010

    Hi Everyone,
    I came across this blog back in January of 2010 when I was in the early stages of finding out about my tumor. I’m from Houston, TX. I was diagnosed with Pleomorphic Adenoma after having a FNA (fine needle aspiration) and told I would need to have surgery sooner than later- to avoid it growing and later becoming malignant. I was misdiagnosed for several years and once I was diagnosed I did not want to go with my first doctor for surgery. Since it sounded scary, complicated and most of all close to my face (it was under my jaw) I wanted to most experienced doctor I could find. After getting a second and third opinion I found my perfect doctor. He is in the Medical Center in Houston, TX at Baylor Colloge of Medicine- Dr. Robert Parke. He is truly AMAZING!

    First of all he has taught numerous of the doctors in the Medical Center this procedure for years, many did the residency with him. No he’s also not ancient. He does about 50 of these types of surgeries a year and specializes in Head and Neck Tumors- plus he has a great staff.

    I had my sugery April 5th and like many had to stay over night, until the drainage plug was pulled out from behind. Dr. Parke did a small to medium incision behind my right ear and down a bit. The surgery went well and tumor was 100% benign. There is of course a lot of pain after the surgery, but that is what the pain pills are for. Although I only used them for 4 days max.

    Sleeping was uncomfortable- my reclining chair was a lifesaver! Eating will take a while so I stuck with lots of soups/applesauce and mash potatoes. Or things cut up into tiny pieces. It took about 3 or 4 weeks to eat normal food again. The most important part is to let you body heal and give time for recovery.

    I did have some temporary paralysis- one of the side effects- on my lower lip. No nerves were damaged but they were stretched. So it took about 4 months for it to fully recover and I still have some numbness in my face. My ear lobe will of course forever be numb and that is a strange feeling I hope to get used to one day.

    Overall, the experiece was not terrible the best advice- patience and lots and lots of rest for the first 2-3 weeks. I took 3 weeks of work but everyone is different.

    Thanks for this blog- I read it almost everyday from Jan. till April and it really helped me out!

    Matilde… any questions…. tilly1818@yahoo.com

  239. caty
    August 9, 2010

    My Doc. find me a new way to do my second. time’s surgery which is Robotic Surgery just wonder if any one of you did this for pleomorphic adenoma recurrence

  240. patricia
    August 14, 2010

    have you guys heard of, or gone onto patients forum for parotid tumors…check it out…!!!we have a big group from all over the world, it is a phenomenal forum and very very supportive.

    best,

    patricia

    • Steph
      November 2, 2013

      Patients forum is GREAT! Thank you for sharing! :)

  241. Kym
    August 16, 2010

    Hi Anita,

    I live in Fairbanks also and am headed to Michigan on September 12 to help my 81 year old mom recover from her surgery. She’s still a pretty tough gal. She and my 84 year old dad still live independently in Northern Michigan. She’ll be having her surgery at University of Michigan on Sept. 7. She’s very optimistic and her biggerst concern is the scar! You have to love her for that.

    Hope all goes well for you……..Kym

  242. Ann
    August 18, 2010

    Hi! Just found this today. I’ve had pleomorphic adenoma x3 in my salivary gland and it just reoccurred in my lymph glands (under the chin.) I will undergo surgery for the latest occurrence. I had radiation after my 3rd surgery.

  243. Louise
    August 21, 2010

    Hi All,
    I had surgery 16 days ago, R superficial parotidectomy, just found this site, as I wanted to get an insight into other peoples real experiences. This type of sharing is invaluable & reasurring, as sometimes it can be quite a traumatic journey.
    I noticed a pea sized nodule underneath the corner of my jaw, thinking it would diissapear, it didn’t, & after a gp visit 6 months later, came the tests cycle U/Sound, FNA, ENT referral/Surgery.
    I honestly never imagined that a finding tiny nodule would end with quite major surgery! I’m optimistic, but this all came as a huge shock to the system.
    Fantastic that its over, & I certainly would not aim to trivialise the whole experience. Being informed is great support for whats ahead.
    Main issues post-op for me were haematoma over the wound site (now resolved on its own) pain & inflamation (I insisted on anti-biotic cover & anti inflammatory’s) to prevent any wound infection
    I didnt touch the wound at all for at least a week (though I gently washed my hair, & kept it dry) as it was glued + 10 stitches, & exposed.
    To Anita awaiting surgery re hair length mine, is short and I am looking forward to it growing to chin length!! To disguise : ) & frankly, stop all the questions,re my scar, which I find very difficult, if I’m feeling fragile…allowed sometimes, only human after all!
    On the positives its over , my facial nerve intact & I can cope with numbness & I had tooth ache initially..my face being alive with nerves!..
    Ok will definitely be keeping this site posted & good luck to everyone pre & post op. everywhere ; )

  244. Jeff
    August 29, 2010

    Found lump March 2010 on one side of neck below lower jaw. Not getting smaller after 4 weeks or so. Family Dr put me on anti-biotics for 7 days. No change. First ENT ordered MRI/CAT and FNA. FNA benign. Surgery scheduled. Took 4 hours because it had grown around facial nerves. Sent home next day still recovering after 6-7days. Some swelling still and have the classic wooden ear from op. Stitches out tomorrow find out the pathology report as well. Hurts to eat solid. Take pain meds before eating. Keep neosporin on stitched area. Near halloween so thinking about getting a rubber scar for other side and dressing up as Frankenstien !!!
    Stay positive and let all Drs and anesthiologists know EXACTY what you have taken and how you feel and you will be fine.
    Peace.

  245. Isabel
    September 19, 2010

    Hi to all, this is a fantastic blog. I am 40 and from Australia, on 2nd September 2010 I had a pleomorphic adenoma (R) removed the size of a golf ball. It all started like most of the stories……’it’s probably just an inflamed gland’……a growing one……..MRI and FNA are important tests that should be performed prior to surgery to give the best info to surgeon. I stayed in hospital 5 full days with a drain. Moderate pain, nothing that a mild pain killer didn’t solve. I had to sleep sitting up for those 5 days and was encouraged to have 3 or 4 pillows for a week after at home. It was very inconvenient and I didn’t get much sleep but I am glad that the swelling improved considerably and quickly. Taking the drain out was uncomfortable but NOT painful and I am not a person who puts up with pain. The important thing is not to hang your head down, and do not lift anything for those few weeks. My jaw is sore, and I wear braces on my teeth so it is about the same pain as having adjustments on the braces. I started anti-inflammatory tablets on day 10 to help the jaw soreness. It is improving.
    I am very lucky I have a very mild tired look in my right eye, and when I smile if you really really take notice there is a very faint asymmetry but other than that no other damage. I do not have feeling in my jaw bone and ear but I am told it will come back. I strongly believe that it is important to have a very competent but also experienced ENT surgeon, mine also used ‘glue’ and no sutures or clips, the wound is so far looking good. I always heal with a red and raised scar and this will be no exception however I will use a product “Cica-Care gel sheet –treatment for scars- Smith+Nephew brand” (it is made in England) that I have used on two previous scars and I guarantee that it works miracles. No comparison whatsoever with vitamin E. I purchased it at the chemist and it costs around $AUS 50.00 for a sheet which will do the job.
    My drain wound is slightly red and therefore I am still on antibiotics to be on the safe side but it looks good. I wish everyone well, and I am so glad that the tumour was benign and I have a smile to show how happy I am!!!!

  246. ian theobald
    September 23, 2010

    G,day,I am also from Oz.Got out of hospital 6 days ago and must say no real dramas except cheek in front of ear swollen and feels like cotton wool underneath but hs gone down to some extent overnight. May be I have not been resting enough as daughters car got broken into so had to replace smashed door window and had head bent over a bit. Mrs went off her brain about me not resting !
    Was in hospital for 2 nights [Strathfield private] with drain and went home with dissolvable stitches covered in plastic. Did not stay on long as whiskers soon pushed off but wound healed up nicely so far. but feel very drained.
    Shaving with electric shaver not nice even though face is numb in front of ear .Odly the only swelling is where numb,front of ear on cheek and bottom of ear.
    The operation lasted about 2 hrs I think and had never had surgery before but last thing I remember was asking when was anesthetic going to work as doctor said soon would feel sleepy when canular put in then waking up.
    Did not hurt as I think they used a numbing gel or something as I did not want to look and had no pre med. Did not wake up sick either but had not eaten since 6pm day before and operation was at 330pm next day although admitted 10 am that morning.
    My doctor here was Dr Kerwin Shannon and very nice.
    His costs I think as have not recieved anything yet are what the AMA guidline rates are $1800 aus which are not to much more than what public Medicare rebate $1200 is plus what health fund picks up [think $300 ] then same thing with aneathisist but if was a public patient maybe would be bulk billed but not sure and also what the waiting list is.
    I got in 2 weeks after consultation.
    I mention this as my GP originnally referred me to a plastic surgeon who after waiting a month to see as heavily booked out in our small regional town said he was the wrong bloke to see which he then re booked me to head and neck surgeon and Melanoma specialist[Dr Shannon ]who also visits once a month but would be 8 week wait here as booked out.
    Silly me looked up another head neck surgeon in sydney region and got to see him 2 days later and was told could operate within the week But…Was going to cost $6000 aus less rebate $1500 aus. and pay upfront .[At this stage assumed all doctors charged much the same ,usually more than medicare if elective surgery but if your in a health fund then not to much after they pay out as well.
    That was when I rang Dr Shannons office in Sydney and discovered he follows the AMA guidlines and was able to get in following week with future visits made locally so made a day of it with wife and visited the city as well. I cancelled the other bloke as said had not consulted with wife and he was not happy.
    I did not mention that my PA was about 1cm in size and had noticed it 9 mths before but GP thought it was glands and on 2nd visit couple mths later advised still noticeable so pressed him to have ultra sound.
    results came back with identifiable mass that in there speak could be Walthins tumour to more servere tumours and suggested to have FNB .I then had this done couple of weeks later and then had to wait 3 weeks as GP went overseas on holidays so was very anxious and stressed.
    When he got back just advised that harmless lump and to relax but if it would help then booked me to se specialist [wrong one as getting old and no longer does that when I mentioned to Dr Shannon ]]
    It was when I read report and looked up on google that I found this sight.
    Lastly ,the sight to go to regarding the RPA hospital feature is Pleomorphic Adenoma Partoidectomy bigaus32 on Youtube .
    Good luck to any one with this procedure .Ian

  247. EEV
    October 2, 2010

    Hi Kim B. i just stumbled upon this blog and wanted to let you know i had a parotid tumor removed by Dr. Crotin on Februday 19, 2007. Mine was actually malignant. Only found that out after the surgery. Before my surgery i had two FNA (fine needle aspirations). I was in the hospital for 2 nights 3days. I didn’t go to work for 2 weeks but should’ve been off longer. Dr. Crotin has not bed side manor that is for sure and it definately a minimalist. I didn’t like him at all. After my surgery I ended up with swelling. Well actually, what was left of my salivary gland was not properly draining into my mouth so my saliva was gathering in a pocket under my ear lobe. mmmm comfortable and attractive. It only lasted a week. I do also remember not being able to eat solid foods for a while because i couldn’t open my mouth. I also coudn’t sleep on my side for months or talk on the phone on that side for months. I still suffer from numbness to my lower cheek and earlobe but its not a huge deal unless im tired or have a bid head ache than the entire side of my face goes numb. I was also on tylenol 3 but only to try to eat. sorry im rambling im just so excited someone else has experienced Dr. Crotin, or as my husband and family like to call him, Dr. torture or Dr. Crouton… Anyway, getting my stitches out by him was the worst experience ever… He pinned me against a wall with one arm and yanked on the bottom of the stitch with the other hand. That was comfortable. I remember walking out of his office shaking and white as a sheet. Hopefully you get this soon. I would love to hear more Crotin stories.

  248. ian theobald
    October 9, 2010

    Hi,Its been nearly 3 weeks now since operation and due to start work tomorrow.Have not seen specialist yet as not due to see him till near end of month.
    Have just got back from 12 days r&r with wife in New Zwaland and dissolvable stitches nearly gone,can turn head nearly normal again and most feeling regained ,even my ear except for small area in middle of it.
    I have small indentation now under cheek in front of ear which becomes more noticeable by end of day as I get swelling there about the size of gum ball which seems to flatten out overnight but chewing soon brings it back.
    It,s a bit annoying but not painfull but can feel pressure in ear if bending over so dont know how I,ll go back at work.
    Now that I,m back home will give specialist a call and let know as to go to out patients in local hospital is a pain if not urgent.
    I did see local GP before leaving but whole side of face was mostlt swolen then and partially numb so see what tomorrow brings.
    Only other side effect is slight muscle weakness when trying to spit or say any F word and can no longer whistle but thats about it. My ear was cut across bottom lobe but has healed ok with only slight lumpiness behind so have grown a beard to hide swelling that keeps appearing and useing an electric shaver on cheek not pleasant even away from operation sight but as I said most feeling returned now.

  249. jeremy
    November 4, 2010

    hi im going to see the doc again on tuesday to find out when i go in for the op.
    im abit sceard of what thay might say as it has changed since they did the biopsy and now my back teeth seem to have moved out abit.
    i have twin boys (5yo)and i think it will be hard for them to see m face so different.ihope its all ok for there sake

  250. DI (Canada)
    November 12, 2010

    I have been reviewing this site for several months as my son was diagnosed with a parotid tumor in June/10. He is in his late 20′s, developmentally challenged and very high functioning though cannot read or write. I have learned so much from this site that I have been able to share with him and prepare myself for his ENT appointments. We have been able to see two specialists who have both recommended parotidectomy surgery as needle biopsy showed a pleomorphic adenoma. Surgery has been scheduled for two weeks from now (late November). We’ve been told about the possible post-op effects, but have learned so much more of what to expect from reading your entries. Thanks everyone! I will keep you posted and be sure to post any questions we might have as time gets closer. Fingers crossed!

  251. Suzanne Gillespie
    November 13, 2010

    I wanted you to know that your blog has really helped me understand what is happening after the removal of a pleomorphic adenoma with a parotid-ectomy. I am not sure if it was a partial or a full parotid-ectomy, at any rate I still do not have use of my lower lip. The nerves were severed and it has been a real pain. Along with that,, I was wondering if anyone had experienced what they call, First Bite Syndrome? I am having a really hard time with the pain. Just about every time I open my mouth I get this terrible pain. Citrus or tart things ,especially. Has anyone had this problem, and if so, what was the treatment for it? Thanks

  252. ian theobald
    November 13, 2010

    G,day,It,s now about 7 or 8 weeks now and things are improving greatly although there were some set backs.
    My wound site became infected shortly after returning to work Not sure if from dirty shirt collar as work repairing phone cables which are always in the dirt here in Oz or from dirty chin strap from my motor cycle helmet or even the possibility of nicking when I shaved beared off,may even of been bit of residue stitching.
    any way just about clear now but 2 days ago noticed neck felt wet and was bleeding again but was bit lumpy day before so guessing still more of stitches but were dissolvable type so will mention to specialist in 2 weeks time .
    The lump I had that would dissapear at night gradually got smaller till specialist drained it as local GP or hospital did not want to touch and preferred me to let expert look at it as it was not annoying me to much and specialist was visiting following week anyway.
    After he drained it it did reappear but only small but after a week I woke up and it never came up during the day so hooray!!.
    From day one no pain and as I write have most feeling in side of face and ear with just a hint of numbness in front of ear,still little bit of muscle weakness in mouth but can whistle again and does not bother me what I eat but shaving is a pain as electric shavers vibration is a bit unpleaseant around jaw line but just have to allow bit more time in the morning or go the Miami Vice look 5 day growth to work.
    I still get tired especially as it,s hot this time of year and very humid with storms every day but may be infection had something to do with this but greatfull that have not had other set backs like some others .
    On the humorous side was worried that a bio metric scan would bar me from re entering the country after holidays over in New Zealand as the side of face where operated dips in a little under chin but not that obvious as face is always moving but got back in the country so my face obviously has not changed too much.
    Fell asleep at work in my lunch break in my vehicle [First few days on return to work 3 weeks after operation ] so fellow work mates rolled there vehicles back and reparked them on opposite side to where parked ,then tapped on my window to advise me that while sleeping had completed a repair and that had slept through it only to find out were playing a practical joke so there can be humour to all this if you are getting a bit down. Regards Ian.

  253. millie showalter
    November 22, 2010

    my best friend will be having a parotidectomy on dec. 2nd your colom has helped me thank you millie

  254. Tiffany
    November 30, 2010

    Hi everyone!

    I just had a plemorphic adenoma the size of a grapefruit removed on 11/22. The doctor expected that I would have more facial paralysis than what I do since it was bigger than he thought given the CT scans and the fact that he had to really stretch my nerves to remove all of it. My left side of my face doesn’t move when I talk, smile, etc. I was doing pretty good until yesterday. My incision site turned red then. Today, it is still red and now it’s puffy. I’m also in the most pain I’ve been in since after the surgery when the doctor had to do something in order to get the wound to drain. I tried to get in to see my doctor; however, he is not going to be in the office until Friday. I spoke with his nurse who called me in an expensive antibiotic and told me to use moist heat to reduce pain and swelling. Up until now, I have been using an ice pack since that’s what they had me use in the hospital to reduce swelling. Anyway, I’m scheduled to see the doctor on Friday @ 9 a.m. I am told they will probably drain the fluid that’s built up then.

    I would love to talk to someone and hear their perspective on how things went after their surgery.

    Thanks,
    Tiffany

    • Nanny
      February 27, 2012

      Hi Tiffany,

      I have a pleomorphic adenoma 6cm x 3 cm, pretty big, and doctor had advised me on the real risk of facial nerve damage. I have scheduled my surgery for April 4th and still pending on another opinion with some doctors in LA.
      Anyway, I would like to know how are you doing now, if your face is back to normal and how the total healing process was.

      Thanks a lot…

      • admin
        February 27, 2012

        Hi Nanny,
        My healing is ok. It still gets a little uncomfortable occasionally but for the most part it’s fine. The itching is also there once in a while too.

  255. Louise
    December 9, 2010

    Hi Tiffany,
    After my surgery in August this year, my wound had sutures around my ear and the neck incision was ‘glued’, I did insist on anti-bioitic cover and tried not to touch the wound.
    Now I find that although all the wound is healed it is really tight and pulls even during usual head movements, lets say its very noticeable. I have still numbness and referred nerve tingle when I touch my ear for instance, weird!
    Someone on this sight advised trying CICA gel dressing, which I bought (internet approx.£25), and applied strips to the healed scar, I find this helps relieve the dragging feeling, and I also use vitamin E oil as often as possible and massage the scar area. This helps a little.
    I try not to sleep on that side of the scar, I’m told it will improve maybe take even up to a year, so we have to be positive! It is a major op after all!
    Take care : )

  256. Keyshia
    December 13, 2010

    Hello I am scheduled to have this procedure in January (approx 3weeks). I was diagnosed with a Pleomorphic Adenomas in my right gland. I must say that this has completely taken up my focus in life as I am so not use to be “sickly”. I really think this post helps a lot to ease my anxiety about the procedure. All I can think about is leaving with dropped lip and eye :).

    Does anyone know what caused their Plemorphic Adenomas? My dr. told me it’s just one of those things that happen. That answer really doesn’t sit well with me.

  257. Andy
    December 18, 2010

    Hi, I had what I thought was going to be my salivary gland removed on 9th December. The surgeon told me shortly after surgery (in mid sleep!!!) that it was a large tumor. He said he had removed it all and that the nerve was bruised, and would recover within a few months.

    At the moment, 9 days after surgery I have a number ear and the left side of my face (cheek) is still numb. I can feel that the bruising it still there in my face which doesn’t overly bother me.

    My left eye is not blinking properly but is tolerable, although does get a bit tired when looking at the screen (either computer or TV) for too long.

    I’ve got some cream from the Doctor’s for my eye, although all that seems to do is to make my eye totally blurry and I end up rubbing it out, so pretty useless.

    The scar is healing OK, and looks like I have a pink elastic band on my neck. Still have a fair bit of dried blood on there, but trying to get it off when having a shower. Shaving is also a bit of a pain in the ass, but can just about get away with it.

    Due to go back to work on the 27th Decemeber as I work shifts, not particularly looking forward to it, a run of Four 12 hour shifts on nights, but as I work on a helpdesk and around Christmas I don’t expect it will be overly busy.

    Looking forward to my face returning to normal as I’m fed up (already) sounding a bit drunk when I speak and having this dodgy eye, although I suppose I should be thankful for small mercy’s.

    Back to see the consultant on January 19th to find out more deetails on the tumour and whether it was benign or what. The FNA showed there were no abnormal cells, so hopeful that the results will be OK.

    Hope everyone is OK, Merry Christmas to you all.

  258. Margie
    December 27, 2010

    Thank you so much for sharing this, it definately helps alot hearing about other people’s experiences. I had the same operation just before Christmas and I was a little concerned about the numbness etc. Your information has helped me immensely.. thank you. I have to go back for a check up in two weeks with my ENT and then another CT Scan in two months just to make sure the tumour is regrowing….thanks again, greatly appreciated. Bless you :)

  259. Margie
    December 27, 2010

    Sorry guys typo in previous comment I left it was meant to say ‘to make sure the tumour isn’t regrowing’ oh dear I wouldnt want it to regrow, sorry guys…thanks again :)

  260. Jennifer
    January 7, 2011

    I am post op , my surgery was on Feb. 1, 2010. Going back to the beginning…..
    First I told several doctors for several years about this lump behind my right ear. Most of them told me it was a muscle or lymph node.
    Finally my family doctor sent me to an ENT. He immediatly said he thought it was a parotid tumor. He took a bx right in his office (hurt a bit). A couple days later he called me and said it was pleomorphic adenoma ( not malignant). He said it is better to get it out because it can become malignant.
    I had a Cat Scan to better visualize what he had to deal with.
    I had the surgery , it took about 3 hours and was very deep ( I was told).
    I recoverd and went back to work in 3 weeks. Some numbness still bothers me, but overall I am fine. Sometime in the the last month I noticed a lump again in the same exact area. I am hoping it is scar tissue NOT another MASS.
    Has anyone had any reoccurences??? Or should I be concerned??

  261. Brandon
    January 7, 2011

    It sounds like it’s probably scar tissue. I know there are often recurrences but from what I know, it is a very slow-growing type of tumor so I would doubt that it grew back that large that fast. You should probably bring it up to your Dr. though just incase but I’m sure it’s just scar tissue or swelling.

  262. Lisa Bertrand
    January 14, 2011

    I had surgery in mid December and I am experiencing facial paralysis..can’t close my eye, raise my eyebrow on the affected side or smile..the surgeon says the nerve wasn’t cut just overstretched…it’s been 5 weeks now and I’m getting kind of anxious…anyone else experience this and how long did it take to recover…I am doing facial exercises in hopes to promote healing…I know the process is different for everyone..I’m just curious if anyone can shed some light on this for me.

    • Helen
      May 3, 2011

      Hi Lisa, Hope you’re still reading this post. I had my right parotid removed 2 weeks ago (19th April 2011) and I too am experiencing some facial paralisis. It doesn’t seem as wide spread as yours as it only seems to be affecting my right lower lip. It is a pain though. I can’t drink out of a cup properly and I am biting my lower lip when I bite and chew food. The sergeon said the lower branch of the nerve had been stretched quite a lot to remove the tumor ( which was benign) and that the nerve might take some time to recover. Externally the nerve appeared intact but it may be damaged inside. They ran an electrical impulse through it before closing and said my lip/ chin wiggled so they seemed reasonably confident it would repair. I have read heaps of literature on the net about damaged nerves and have learnt that this type of nerve damage is more likely to take months rather than weeks so hang in there. I know it’s a little disheartening

  263. brittany
    January 20, 2011

    hi guys sorry i havent been on here for a long time i still havent had the surgery bc of my schedlue with work and school and when i was ready for it i found out that i was pregnant i was woundering how long after i have the baby i should do the surgery bc i know it will be hard for me to take care of a new born and recover i was going to do it maybe a year after he was born or should i do it sooner im still worried about the surgery bc i will have to be in there for 3 hours so i was woundering what were all the side effects from the surgery and how long it took to return back to work

  264. Louise
    February 16, 2011

    Hi, I am now 7 months post op. I posted earlier, & this is an update..finally the scar around my ear/neck area does not ‘drag’ so much, now my ear has some sensation… around my jaw line (on the op. side) it still feels ‘nervy’ & strange to touch!
    An unusual tingling & quite unpleasant, & my ear seems slighly swollen.

    The worst symptom I have recently noticed..is, when I eat a meal my face literally goes bright red, like burning & I feel extremely hot! Its very noticable & embarassing & it would now prevent me from eating out.
    I am aware of a post op. ‘syndrome’ which is associated with this surgery, & describes these symptoms of sweating after eating. Has anyone else experienced this?

  265. Debi
    March 17, 2011

    Thank you so much. I have surgery April 19th to remove the tumor. I pray that it is not cancer. The biopsy could not prove it was or was not cancer. Thank you again.

    Debi Odom
    Phoenix Arizona

  266. Abhishek Kashikar
    March 17, 2011

    Hi Everyone, thanks a ton for this post,your comments and feedback. I am about to undergo surgery on March 19. I was told by the doctor that the recovery will take about 2 weeks time. But after reading all the comments i feel it would be expecting too much in just 2 weeks time. I understand that nerves might get stretched during the op which might result in partial facial paralysis. I am very thankful for your feedback. It has helped me to keep my expectations in check & realize what to expect in the next few days. I am keeping all my figures crossed and hoping that none of the nerves get damaged. Will post an update after the surgery.

  267. Abhishek Kashikar
    April 1, 2011

    Hi Everyone, this an update to my last post. I got my tumor removed on March 19. It was a superficial parotidectomy. Its been two weeks since my op and i can say that i am 95% back to pre-op condition. Post op i had the drain pipe sticking out of my neck for 4days. On the forth day as the drain was below 10cc the doc decided to pull it out. I was discharged from the hospital on the day they removed the drain. It did not feel much when they removed the drain. The docs said that they had to operate using microscope since they needed to be very particular about saving the nerves. My op lasted for 6hrs 15mins. I was a little surprised post op when they said that it lasted that long as prior estimates were around 2-3hrs. Though the docs saved the major nerves there was still the case of my nerves being stretched during the op. Basically the neve from my ear to lower left lip has been stretched. I had lost movement on my lower left lip for a few days post op. There was numbness in the area around my left jaw, earlobes & lower left lip. Since the op i.e in the last 15days i have been asked to do few exercises to regain control over these facial features. With time i am able to move my lower lip now. However i can notice a difference in the way i smile and talk. I can feel a distinct difference in the way my face feels when i talk. Doc says that this is expected and with time (couple of months) that feeling would go away. The only concern that i have at the moment is with my left ear. I have lost all sensation in the lower part of my left ear. Even a pin prick does not cause any sensation. To this the doc said that during the operation they used some sort of heat treatment to save the nerves. While doing that one of my nerves in the left ear must have got too much heat. As a result i have lost all sensation in my left ear and in few places just below my ear. Touch wood, there has not been any change in my hearing ability. I can hear everything but just can’t feel the touch on my left ear. Doc has said that getting the sensation back in my ear would take time (4-6months) but there is a possibility that i might never get the sensation back. Doc has asked me to be cautiously optimistic. I am currently taking oral meds which are routine after any operation.

    Thats about all there is to it. I hope my experience helps.

  268. Brion young
    April 3, 2011

    Hey, Buddy glad to hear this it make me feel very great. Cause I had the same surgery in my little country. (Belize) a little Country in Central America were medical attention and treatment are very much out of reach to one unless you are amoung the well finance people, and I for sure ain’t one of them. I actually got my surgery done in june of last year by some doctors visiting my country to donate medical services from the USA. Thanks to them i was lucky enough to get this done. Now im very happy after having that tumor for about 2.5 years.

    well i think that all thank you for sharing your expierence with all.

    Brion Young
    Belize Central America.

  269. Michelle Cruz
    April 6, 2011

    Hi everyone,
    I am 6 days post op and consider myself to be very lucky to still be able to smile. As the swelling subsides I notice the feeling is returning. There is still alot of numbness to my ear it feels strange. My drain and stitches have been removed and it’s still quite uncomfortable at times.I have this burning or weird sensation when I eat not sure if anyone else has had this occur? I havnt experienced the sweating when I eat like some, but I hear that could start months down the line? I was a little nieve when I was diagnosed I asked my surgeon could we handle this on a Friday and I can be back at work Monday morning…haha
    I realize now the recovery can take months maybe a over a year? So I’m optimistically giving myself time to heal. I will continuue to post updates as things progress.

  270. Paul Wandt
    April 7, 2011

    Well here i am sitting in my chair, i had the paroid tumor partiallly removed and the tumor was growing in my gland and mixing with the nerves. The scar is down the ear and up the backside of my ear. On my face there was a marble size lump, well it was growing in and not out. Right now much swelling upper part of ear. There is a large indentation on my cheek, i do not look like me right now.Has any one had a crader on there cheek and after time was it less noticeable. Pain level is still up there and have a dull headache. Was in surgery 3 and a half hours. Stayed overnight and came home yesterday. I am sorry but cannot type to much right now looking down.
    will get back with you after I am with it a little more…..God Bless..

  271. Sheila
    April 7, 2011

    Thank you so much for your story. I have been diagnosied with the same tumor and awaiting surgery. You have taught me a lot.

  272. lynn
    April 13, 2011

    do i need to subscribe to this or can i start talking now haha

  273. lynn
    April 13, 2011

    went to the doctors nov 10 with tonsill problems again it was swollen since the aug and no antibiotic would help, when i was there the doctor felt a lump at the bottom of the right ear lob so refered me to the hospital, i went for a biopsy on the lump end of nov, the result come back in conclusive few days later really ill with an infection in the lump very poorly for a few days and antibiotics, and the lump felt as if it was really swollen and sore, had MRI scan 8th dec, the tonsill showed very enlarged and the lump looked like it was attached to the tonsill, i was booked in 20th dec for a biopsy on the tonsil under general aesthetic, i still had no idea of the MRI scan results didnt get those back till jan 11, booked in 20 dec for biopsy last minute waiting for surgery actually in the prep room they wanted to me to sign the paper work from biopsy to tonsilactomy they just said they wanted it all out not just biopsy. Very ill all over xmas worse pain ever, seen my surgeon 4th jan who then told me they haad taken tonsil out cos they thought it was cancerous and didnt like the look of it, i was actually not made aware of that till 4th jan 11, anyway results came back all clear, then he said the lump will have to be removed as well, so i was booked in for feb then it was cancelled and then changed to march 25th (would of been my moms bday) who died a few years ago to non hodgins lymphoma, the lump was in the paratoid gland it was a 3 hour opperation, i had the drain fitted with the plastic bottle looking thing, but it actually was working properly untill the nurses came round every few hours to give the bottle a squeeze to drain which was a horrible pain and noise then they decided to take the bottle bag off and attach it to like a suction on the wall like a small oxygen suction which sucked away all nite what really the bottle should do, it was ok apart from the annoying noise that sounded like a buzzing all nite in my ear, sent home the next day everything fine.. looked a bit nasty i had 32 stitches and was very red and it did ooze alot, i was back in work after a week i wouldnt of been but its my own business so guess i had to, but felt ok just very tired, i had no droopy face or lip or eye problem that was my concern… how ever today iv been very ill and went to doctors got a chest infection head banging and ears ringing, the doctor said my temprature was 37.9 so a little high so got some antibiotics, if iv got a tempreature in the morning im to go back to doctors then i will be going back to maxialofacial and stay in cos i must have an infection.. my scar at the moment looks very good and healing very well its not been 3 weeks yet, however i think i went back to work far 2 soon cos i am so tired, i get my results back from the tumour they think a warfins tumour on tue 19 april so a little worried as we all wud be… i have done a video on you tube to show the scar and the week after my stitches taken out, however had to go back she had left 3 stitches in which the nurse had missed but it looks much better now…. i will be doing another vid soon to show u how well it looks now the vid looks nasty first it was only 2 or 3 days old if u wanna watch it u can find it under feelynngood11, paraotid gland i will do another one soon but it does look much better, i have no feeling in my ear at all and it is swollen but my jaw and face are fine

  274. Sheila
    April 15, 2011

    Lots of great information…knowledge is power.
    My 15 year old daughter has a growth in her parotid gland. The doctor got her in to have an ultrasound within a week and she just had her 2nd ultrasound 2 weeks following the initial one. We are seeing our md today to go over the results, however I do know that now she has to have a MRI guided biopsy…she got this appointment exactly a week after her last ultrasound. Everything is moving along so fast and the word suspicious has been used so I’m really worried. I read that the younger a patient is the more of a chance that it is cancerous. I’m not letting my daughter know that I’m worried and just told her that they want to have a better look at the growth. Not sure what our md will say this afternoon , I just hope that my daughter will be ok. I’m also concerned since we live in a smaller city, Nanaimo, Bristish Columbia if the doctor here has enough experience if she needs surgery. This hospital unfortuneately has repeated outbreaks of c.defficile which also bothers me.

    Has anyone here known of a younger person that has had this surgery? Is there ayone here that lives on Vancouver Island or Vancouver?

    Thanks,
    Sheila

    • admin
      April 15, 2011

      If I remember correctly, I actually found my tumor around that age (removed it about 12 years later). Everyone told me it was nothing so I just ignored it. I have not read anything about age having an influence over the malignancy of these tumors. I’m sure all will be fine.

    • Sheila
      May 11, 2011

      We just got the results of my daughter’s FNA yesterday, it is a benign pleomorphic adenoma. The doctor recommends removal as it can turn cancerous over time. It is also the largest tumor he has worked with. The actual results were 85% benign which I wish he hadn’t said to my daughter…she couldn’t sleep last night because she’s worriend about that 15%.

      He sent us home to google more info about this particular tumor and possibly make an appointment with our md to talk about it. We have decided just to go ahead with the surgery, although facial paralysis is a real concern. I think it’s the right thing to do…especially since this tumor will keep growing and has a possibility of turning cancerous.

  275. Chelsy
    April 27, 2011

    Reading everyones stories has really helped me. I’m 24 years old and have had a pleomorphic adenoma on my parotid gland for about 8 years now. I’ve just recently been diagnosed with this. Prior to this the docotrs just kept telling me it was a lymph node. Obviously they were wrong. It wasn’t until December that I persisited in receiving a biopsy. Now it’s April and I’m awaiting an ultrasound at the end of July. Then after that, I will be looking at rescheduling the surgery. I can’t believe how long this is taking. 4 months later since I persisted on having a biopsy and all I have is a diagnosis! I can’t wait to have this out and move on.

    My biggest worry is that it will recur again. Has anyone heard of it coming back… how common is this?

  276. Claire
    April 30, 2011

    Hello – just a quick reply… I had a superficial pleomorphic adenoma removed from my parotid gland in 2002..I am due to have another lump taken out on the 25th May.. I am petrified in case it is malignant, as I know this can be the case.. but my surgeon didn’t seem that worried after seeing the MRI and feeling the lump.. He just said he was so sorry that it has come back as he was sure that the whole tumour was removed on the last surgery. I had facial damage for just under a year, but have been told the likelihood of permanent damage is very likely this time round… I am so scared about what the lump will be, facial nerve damage is the least of my worries… I spend alot of time..mostly at night crying worrying about my two young children…
    My surgeon was going to do a FNA but said as it has grown (during my pregnancy) it was best to remove it.

    Claire.

  277. John
    May 14, 2011

    My surgery date was the 10th May 2011 (5 days ago) for the removal of a pleomorphic adenoma. It began many years ago when I felt a small pea sized object in my left cheek (towards the jawbone). after many visits to my GP with no diagnosis I had cause to visit a general surgeon regading a hernia condition in 2010. By this time the lump had developed and was much more noticeable, he pointed it out to me and gave me his belief that it was a pleomorphic adenoma. This was proven via a fine needle biopsy and an ultrasound scan. 12months on from diagnosis I have had the operation. I awoke in the recovery room after 4 hours surgery, it was a further 2 hours in the recovery room before I was returned to my room. On meeting up with my surgeon post op he told me the surgery was more challenging than he hoped but so far I am not suffering with any facial nerve difficulties. 5 days on pain is occassional and not quite as severe as I imagined but my face remains very swollen and tender. I continue to take painkillers every 6 hours when pain occurs, normally aftger eating. I hope the shape of my face recovers….

    I am based in the North West of England and the operation was carried out by Mr S Jackson

  278. Ken
    May 27, 2011

    I am scheduled for the surgery on June 9. I was told I had a pleomorphic adenoma slightly larger than 2 centimeters. They did a needle biopsy and did not detect malignant cells but were quite insistent that it must come out. I am having this surgery done in conjuction with another surgery that same day on my throat to open my airway and to replace an implant on a vocal chord that has been paralyzed for quite some time. After reading all the posts I am somewhat nervous about doing the two surgeries at the same time. Doctor told me that I would be in the hospital for two days and that recovery would be approximately one week at home. From the posts I’ve read, that seems wildely optimistic. Has anyone had a similar experience?

  279. Maggie
    May 27, 2011

    I’m 18 and I’m freaked out beyond belief. I’m so glad I found this blog…Six months ago, my salivary gland got swollen and was red and SO painful, so I went to my doctor, was prescribed antibiotics and was done with it. However, during my physical for college, my doctor told me there was still a lump I didn’t notice and immediately sent me to get a CAT scan. I went in today to an ENT who told me that I had a pleomorphic adenoma. Maybe it’s just because this is my first procedure, but I was so very scared. My adenoma is one centimeter, but my ENT scared me when she started talking about the incision, scarring, and the facial nerve damage. I’m glad I stumbled upon this. I still have at least a month and a half before the surgery is to be completed. I still have to get my MRI and needle biopsy. Best of luck to everyone!

  280. Ken
    May 27, 2011

    I appreciate the comments concerning the recovery period and complications that you’ve had during that time. They are helpful to me as I weigh the wisdom of having the surgery to remove the tumor in conjuction with opening the airway and vocal chord implant. I just thought I might as well get all my misery done all at the same time instead of two separate surgeries. Having second thoughts on this. I would appreciate anymore insight on your experiences during recovery. Thanks!

  281. admin
    May 27, 2011

    Hey Ken. Unfortunately, I don’t have much more insight on recovery than what I have written so far. Today (about 2 years after the surgery) I still have some daily reminders. The sweating is probably the most obvious but sometimes the area gets itchy or tender (as some surgery areas tend to do over time). Other than that, I’m sorry but I don’t have much else. Hopefully someone else does.

  282. Ken
    June 3, 2011

    Just one more week before the surgery – still have doubts about the wisdom of doing both surgeries at once – but I am going to gut it out and hope for the best. I will let you know how it turns out. Thanks for letting me unburden myself here on the site.

  283. Daniel
    June 8, 2011

    Question for others diagnosed with Pleomorphic Adenoma: Did any of you have symptoms other than a lump, such as numbness and tingling? I’m scheduled for surgery July 19, but meanwhile I’m nervous because I’ve read that numbness can indicated malignancy. (FNA revealed Pleomorphic Adenoma, but I’ve read that a significant percentage of Adenoid Cystic Carcinomas are misdiagnosed as PA).

    • Sheila
      June 13, 2011

      Hi Daniel
      My 15 year old daughter is going throught the same thing. She has been experiencing pins and needles for some time, now she has numbness and twitching and spasms on the tumor side of her face. Our surgeon in Nanimo has referred us to a top specialist in Vancouver now because of these complications…it means the tumor is pressing against the 7th cranial nerve. Her FNA showed it to be a pleomorphic adenoma, It’s quite large and causes her pain as well. I’m hoping that she doesn’t have to wait too long to have it removed because she can’t sleep very well either. Our specialist here keeps telling us that it is benign. I know that FNA’s are not conclusive so I’m worried about it because it sure is acting like a cancerous one. She was diagnosed 2 and a half months ago.
      I hope you have a top rated surgeon, it sounds as if it is interfering with your facial nerves. Good luck!

    • Daniel
      June 16, 2011

      Thanks for your response, Sheila. The one thing I can say that I’ve learned over the past few months dealing with this is, being assertive with doctors about your medical well-being might make you look hysterical, but in the end it’s more likely to get results. I just got my surgery moved to 2 weeks from today. It couldn’t have waited 5 more weeks. Finally, my surgeon was nice enough to squeeze me in. My guess with your daughter is (and I’m practicing without a license here), if she was diagnosed 2 1/2 months ago and the tumor hasn’t changed dramatically, it’ll probably be alright, but off course it needs to come out ASAP. Thank you for sharing your story. It’s helpful to hear from others who are experiencing this. I wish the best for you and your daughter. This mess is unnerving!

    • Lindy
      June 23, 2011

      Daniel – exactly right. My histology has just come back, mucodermoid cyst with features suggestive of a low grade carcinoma. I’d had it for 11 years, it was tiny, symptomless and hadn’t changed in size, FNA inconclusive – they were convinced it was a benign pleomorphic or warthins tumour to the extent that they said it was up to me whether to have it removed. I put the surgery off twice because I was going on holiday!! Can’t believe this has happened but so glad I’ve had it done now. I need to have a CT chest, MRI and ultrasound now to be on the safe side. They’ve told me not to worry and it’s more for my reassurance so just waiting for my scans now. Trying to be positive but am in total shock.

    • Daniel
      July 12, 2011

      Hi Lindy, I’m sorry to hear your pathology came back malignant. If it’s low-grade mucoepidermoid and tiny in size, I imagine that’s a very good thing. I hope your scans are clear and that you can find peace of mind from this ordeal soon!

  284. Lindy
    June 11, 2011

    It’s two weeks since I had a superficial parotidectomy and although my swelling has gone down, it keeps flaring up such that I can’t clench my teeth together. I still have a numb lump in front of my ear and down my jaw and have noticed some yellow fluid on the pillowcase in the morning. Still feel tired too. Does this sound normal?

    • Daniel
      July 18, 2011

      Lindy, I’m glad you posted this. I was worried that I was developing some kind of abnormal response, like excess scar tissue. I’ve got an egg-shaped hard lump under my jaw that is deep enough that it’s slightly pushing on my windpipe making it feel like I’m slowly being choked. I’m about 2 1/2 weeks out.

  285. Ken
    June 16, 2011

    Well its one week ago today since my surgery. All in all it seems to have gone rather well. I still have some significant swelling at the incision site and on the lower part of my right ear. Did run into some infection at the site but I think we have it under control. I get my stitches out today and should find out more about swelling and any lingering infection issues. My biggest complaint has been an ear ache in my right ear (some fluid has pooled in my inner ear) and I sweat profusely from minor things like drinking hot liquids – weird! I’ll keep you posted as things develop.

  286. Arlene
    July 1, 2011

    hi everyone .. just stumble across this page while doing some freaky last minute research. I have just turned 18 and noticed ‘the lump’ years ago and like so many of you had been told it was nothing off my doctor. however last year whilst having another operation my surgeon was curious and took a biopsy and later send me for ultrasounds and ct scans and more biopsys .. a few months ago she diagnosed it as a pleomorphic adenoma. she was stuck for a while on wether to leave it there and keep monitoring it as she didn’t want to leave me with a scar etc if it wasn’t 100% necessary. anyhoos to cut to the chase she is now wanting it removed (which I’m still not keen on) .. my operation is on Monday and I am petrified to be honest. yes I know it’s not severe and it could be a million times worse but I’m just really worried about everything I have read and certainly not please about the scar !!

  287. Ali
    July 2, 2011

    Hello all-
    I had surgery this morning. It is now bedtime and I am still in massive amounts of pain. It seeks the pain meds don’t make a difference. They have given me hydrocodone, which I have taken in the past, and in he past it has worked wonders so I know that it’s not the type of meds that they gave me. Has anyone else experienced pain like this? It seeks
    Most people think it is relatively not too painful. I usually have a high pain tolerance. I
    Thanks,
    Ali

    • Ali
      July 2, 2011

      Sorry for the typos- iPhone wouldn’t let me preview my post properly!

  288. Ken
    July 6, 2011

    Its been slightly over 3 weeks since my surgery. Still experiencing a combination of numbness and tingeling along the right jaw line up to the lower half of my right ear – sure feels weird to drag a razor across the area when shaving – really freaks me out! I am still experiencing some swelling at the incision site – the doc told me that the salivary gland (where the tumor was located) is still not functioning properly so I need to “massage and milk” the area to get the gland flowing to help reduce the swelling. My hope is that eventually the numbness will go away and things return to normal.

  289. Ken
    July 11, 2011

    Rough weekend – lots of swelling in the incision site because the salivary gland is not functioning properly. And now I have another weird twist – in the last 24 hours I have had at least six incidents of sharp pain that appears out of nowhere right below the ear lobe where the incision is. Really catches me off-guard when it happens. Will have to follow up with the doc on this. My right ear lobe and jaw line are constantly tingling and it is driving me nuts.

  290. Daniel
    July 12, 2011

    Got the parotidectomy 11 days ago and found out today it was benign. The only problem I’m having is that there is a hard swelling that’s pretty big and deep in front of the incision and it’s starting to feel like it’s pushing against my throat. Has anyone else had a hard swelling at the incision site? It’s like a rock-hard lump. Doesn’t seem like this should be starting now.

    • Arlene
      July 26, 2011

      I got this, my surgeon told me today it’s just saliva building up as the gland is obviously still producing saliva but the canal it usually travels through has been removed so it has no where to go. it felt really hard like muscle but I suspect that’s what it is. your body will eve tually stop doing it, after 4 weeks mines is still doing it. had it drained with a needle a few times, seems to have calmed a little though x

  291. wendy
    July 16, 2011

    My dad had a Pleomorphic Adenoma and had it removed and removal of the Parotid Gland on 13th july 2011, surgery went well ,the tumor was very big about the size if an orange so very big,he has an incision from the top of his ear right round his earlobe and down his neck.
    Surgery took about 4hrs.
    He has complete numbness of his left side of his mouth so eating and drinking are a bit of an issue, his ear lobe is completly numb, and he has a lot of pain in his eye , apparently due to tear duct and nerve damage he has also got an infection in it.

    Having read the blogs no one else seems to have encountered this problem.
    He said that the wound is not causing him any problems (yet) but his eye is agony…..
    The brusing and swelling have started now ..poor dad looks like hes had row with a car windscreen…I no he has a long road ahead of him in regards of recovery just hope he doesnt suffer too much…at 72 he could do with out too much discomfort……

  292. Sam Stowers
    July 17, 2011

    I’m a 16 year old male… It was slightly larger than a golf ball and now I’m just chilling in the hospital for the secnod night…. The meal the nurse brought rite after surgery was a hamburger and I ate it with ease… Let’s just hope a can get back into football in 4 weeks as I’ve been told

  293. Janette
    July 20, 2011

    Had my Parotidectomy on my right side march 2010, everything went ok, was in surgery 5 hours. Get the odd bit of ear ache and my ear and cheek are quite numb, and tingling that i try to itch !!! if i get an tickle at the top of my ear i have found if i itch my scar on my neck the tickle goes away on my ear!!! The cold weather tends to make my face ache a little more. Went for a follow up appointment in january 2011 and mentioned that i had found another lump on my left side, which they said they had noticed during my ultrasound scan previous nov 2009. ( i found it strange they never mentioned it to me). So they sent me for an mri scan on my left side, and an ultrasound too. The Specialist has told me he is 100% happy it is an enlarged lymph node. I go again in August to get it checked ( i am convinced it has grown in size, even though it is tiny). Anyway heres hoping that everything will be ok.!!!! And very best of luck to everyone else too :)

  294. Arlene
    July 26, 2011

    hi guys. well it’s been three weeks since my surgery, got called into the hospital today to be told the results of what was diagnosed as a pleomorphic adenoma was actually a ‘mucoepidermoid carcinoma’ so it was in fact a cancerous malignant tumour (not exactly happy my doctor ignored it for years). will find out next week if I need to go for further treatment, be it radiotherapy or whatever, fingers crossed all is fine though. recovery from surgery has been great, only had minor problems with the hole where the drain was kept leaking all the time but not alot of pain, just as my boyfriend called it ‘a minor inconvenience’! the scar is looking brill (can’t believe that was the thing I was worrying about) to anyone having doubts on the surgery, go for it. i was against having it and caved last minute and thank god I did. anyways hope everyone is well, my thoughts are with you all

    • Jega
      April 17, 2014

      Hi Arlene,

      After the surgery my mother’s biopsy came as mucoepidermoid carcinoma.
      Please let me know what process you have gone through after your surgery.

  295. winnie
    July 26, 2011

    i am so relievedto stumble on this site in my quest for knowledge.I have a tumour right under my right ear and thedoctors believe its Pleomophic adenoma and wants to remove it.i have been so worried about it.Having gone thru all the comments i feel more relaxed and confident that all will be well and am not really alone.

  296. Lindy
    August 22, 2011

    It’s been three months since my surgery and being diagnosed with a muco-epidermoid carcinoma. I’ve had a CT scan chest and neck, MRI neck and ultrasound of my neck and thankfully everything is fine and no further treatment is needed except monthly follow ups for the next year. My scar is barely visible – that was my main worry before having surgery – never thought about the tumour being cancerous!! I still have quite a bit of swelling in the area which is due to the fact I had to have a second operation on day two due to a haematoma which had to be drained – only 5% of patients get that – trust me to be in that % as well. I still have a feeling of my ear being blocked, like I have been underwater but I’m told thats due to the residual swelling. I’d advise anyone in any doubt to go ahead and have the surgery – my outlook could have been a whole lot worse if I’d left it any longer.

  297. Sharon
    August 29, 2011

    I found a lump in my cheek- up high in cheekbone. Went to my family Dr. who sent me to an Oral Surgeon. Oral surgeon did scan in his office, said it could be a couple of things, and mentioned the tumor. He made an appt. to remove the tumor. tumor removed by Oral Surgeon– he had trouble getting it, and was digging up. I kind of felt butchered.
    I returned for my “post op”, he said it came back as Pleomorphic Adenoma and we would have to watch it very carefully because it would come back.
    I went back to my primary Dr. who had not received a report. He said the incision site looked ok.
    I contacted my insurance, looking for another Dr. other than the Oral Surgeon that did the procedure and was told he was the only one. I was suppose to return to the Oral Surgeon in 6 mos.
    I was having pain in the cheek and it would go up to the temple. I returned to Primary Dr. who referred me to ENT Dr.
    I met with the ENT Dr. gave him a quick version of why I was there and gave him the pathologyreport (that my dentist had to request). The ENT Dr.’s eyes got big and his jaw dropped. He immediately tested my face for any facial nerve damage and said I was very lucky. The tumors are not removed by Oral Surgeons because of the nerves involved, etc.
    The tumor was not completely removed, but the ENT Dr. will wait a while, because now I have some scar tissue. Looks like the pain I have, I will just have to deal with.
    Do Not let an Oral Surgeon take any lumps out of your check if this tumor is suspected!!
    Request to see an ENT Doctor!! I was lucky.

  298. carolyn
    August 31, 2011

    I just had parotidectomy 6 days ago. I had a lot of pain that didn’t resolve with iv or pill pain medication for most of the day of the surgery. It resolved by the evening and has been manageable pain or discomfort since then. I am getting pressure headaches, i assume from the swelling and bruising resulting from the surgery. I am counting the time until I feel better. I was glad to see this blog because I was feeling like my experience with the discomfort and headaches and overall unhappiness post surgery was abnormal and I should be hopping around like nothing happened. My attitude is holding because I know this is temporary and will pass in a short time. I do think that I may have better chosen to avoid solid foods and not hurt that area by chewing regularly. I started chewing right after surgery and probably should have stuck with liquids this week at least. I just did not lose any appetite and really love eating and really can’t afford to lose any weight without risking health and healing ability. I am so glad to hear of the swelling and stiffness around the ear and jaw as i was beginning to worry. I have had no fever and do see that this is normal swelling and internal bruising. My headaches, especially when pressure builds while sleeping are the worst part I think. I do sleep elevated but the pressure is painful. I see that these problems are within the range of normal and will resolve. It really does help to know that I am not experiencing this “wrongly” and am responding normally to a surgery that takes time and pain to heal from. I think I had very unrealistic expectations of what I should be like by 2 days post-op. Good luck and patience to anyone who has this procedure. It will pass!

  299. Jon
    October 3, 2011

    Had surgery on 9/30/11 for parotid tumor. The surgery went well and I went home the evening of the surgery. I’ve had some pain, but not terrible. My biggest complaints are that it is difficult to deal with the drain, which we are leaving in for one week, and my ear feels totally crazy. It’s completely numb and has some tingling sensations. My hearing is fine. I had no idea that this could happen, so it kinda freaked me out. Glad for this forum. The big thing now is that I’m waiting to hear the result of the pathology.

    Psalm 112 “He is not afraid of bad news; his heart is firm, trusting in the Lord.”

  300. Jon
    October 5, 2011

    Just an update. Path came back on 10/5 – pleomorphic adenoma. Very glad. Thanks for keeping this going. It has been very helpful.

  301. Chris
    October 10, 2011

    I had exactly the same operation a week ago for the same reasons, also benign, and I can with utmost confidence that what is described by the author is the most informative and practical explaination of what to exepect – to date in my case. Thank you. I will refer my Proffessor and ENT surgeon to this page for his many many patients to read!

  302. Jean
    October 16, 2011

    @Sharon – Oral maxillofacial surgeons are fine to remove tumors in the face area that are associated with the gums or jaw, but you’re right on. If your oral surgeon suspected a parotid tumor they should have immediately referred to you an ENT. I was also referred to an oral surgeon for a small but irritated lump in front of my ear lobe. The OMS right away identified the mass as a parotid tumor and got me into an ENT the next day. Unfortunately, the OMS also discovered a bone tumor in my jaw joint on the same side, and directly told me it was out of his league. Luckily he had a relationship with one of the top OMS surgeons in the country who agreed to take me as a patient. This OMS coordinated my first surgery with an ENT so I could get the parotidectomy performed at the same time the OMS took biopsies of the mass on my jaw. Mass in the gland was pleomorphic adenoma, and bone tumor also benign – yay – but was confirmed to still be growing. This was back in June and my healing was similar to what others have posted except for swelling in temple area and in front of ear never went away, but this is where the mass in my jaw was continuing to grow and be angry. And my ability to open my mouth, which was limited before the surgery, decreased to about the size of one finger. I had to wait 3 months to heal and have custom prosthesis built . I had jaw joint replacement 13 days ago –the OMS used used my scar from the previous surgery for the incision, just extended a couple of inches at both the top and bottom. This surgery was much more invasive, but surprisingly the healing is about the same and I think actually progressing at a better pace then the parotidectomy. Sorry to ramble, I guess my point is that there are some really good oral surgeons out there and people should listen to their instincts if something doesn’t seem quite right. I’m sorry you had to go through that needless surgery with the bad oral surgeon, but so glad you’re back on track and getting the proper care. Best of luck!

  303. glenn
    October 29, 2011

    Great post and website. I am going in for my THIRD procedure for removal of my pleomorphic adenoma. I had one major surgery in 2006, a small below the jaw procedure in 2010 and go in for another surgery November the 14th. Hopefully this will be the final time, as they are planning a full dissection around the nerve. I used Dr. Lieonetti at Loyola University Medical Center in Chicago for the first procedure and Dr. Chris Lykins for the second and now the third. But, like the majority of you i went through several doctors who at first had no idea what it was. Mine tumor was first discovered by my dentist during a routine cleaning and that is when i started the carousel of doctors who had no idea. Five years after my first major surgery i have minor numbness still around my left ear and a slightly restricted smile on the same side. I still have the pain from tart and bitter food and drinks. I look forward to having this final surgery behind me.

  304. Mindy
    November 4, 2011

    This blog is dead on! I had the same surgery on the 25 of October it took 3.5 hours, but I was sent home the same day.. I was off work for a week and slept most of that time. I’m still feeling some pain but it’s tolerable now. My ear lobe is completely numb and so is the side of my face around the incision. I also had a drain put in. And removal of the tube was painful. It burned really bad. But I’m grateful the surgery went well and was non-cancerous.

  305. Josie
    November 6, 2011

    Hello,
    Seven weeks ago I had a Parotidectomy for a benign tumour.
    Here are some of my experiences that were not life threatening but still upsetting all the same.
    Firstly, when I first looked in the mirror after surgery I noticed my right eyebrow was much higher than my left.
    I also could not raise my left eyebrow. This freaked me out as I thought it might be permanent. My specialist assured me that the nerve was not damaged but the nerves can become bruised with surgery he said the movement should return by christmas.
    Secondly , ten days after the operation I had a coughing fit while eating and felt something burst in my face. When I felt my face I had blown up and had a massive swelling on the incision side and had to be re-admitted to hospital and be drained under a twilight anesthetic and have the drainage tube re-inserted. My specialist said it was a blood clot possibly caused by the coughing fit, but, he also asked me if I had started taking my fish oil again which I had as no one told me otherwise. I knew not to take it before the surgery but did not think it would be a problem afterwards. Apparantly, this may have contributed as it can cause bleeding and bruising.
    Anyway, apart from those two things I am feeling much better. You really do need to allow at least four weeks to start feeling normal again. Its funny when I first had the op I felt like I had a plastic ear on my head it felt so weird because of the numbness. I am still a little lop sided in my eyebrows and have had to have a little botox to relax the other side.
    But, I am very thankful that all went as well as it did.

    Josie

  306. Isaac
    November 7, 2011

    Hi everyone,
    I had this surgery on September 19, 2011at Head & Neck clinic, Women’s College Hospital in Toronto. The surgery was very successful; my facial nerves are fine and I did not feel any pain. One can hardly notice the scar because I started applying vitamin E oil about 2 weeks after the surgery as per my surgeon, but the numbness is still there. Kudos to Dr. Goldstine

  307. Namrata
    November 13, 2011

    hey guys,

    it was great knowing i’m not the only one feeling the numbness and weakness on my ear, cheek around the jaw and back of my head. i had my op on the 9th nov’11 they discharged me on the 12th, i was kept a little longer in the recovery section as my bp was quit low, after the 3 hours surgery.
    the most unpleasing fact is you just want to know how your body is performing to the surgery, and if all your tissues and nerves are responding, but as it might not you could feel the fear of lossing the senses around that area, any kind of excitment causes a pain on the ear and head, also the mouth feels numb. im just trying to avoid pain killer as much as possible.but wish i could do without the stress bit, infact i have to resume work by 14th or 15th november, and will still have my stitches on.
    wish you all luck with the recovery, keep writting.

  308. janette
    December 9, 2011

    Hi everyone, just a quick note to say, i was suffering after my op, in the cold weather even more so. I could cope with the pain in the summer months, but as soon as it started to get colder, the side of my face, teeth and ear started to hurt, i was taking parocetamol for ages and it didnt seem to make any difference. I eventually went to see my doctor after 2 years , explained my symptoms, he said the nerves are damaged, which are more sensetive in the colder weather. He prescribed me CARBAMAZEPINE, 100mg 3 times a day… They have worked a treat !!!!!!!! I am pain free for the first time in a long time, i highly recomend. I know medication isnt for evryone, but for me its a must., over the colder months. I just thought i would share this, as i just thought i would have to put up with it as part of the op. ( even my specialist said its a small price to pay to what the outcome could of been,when i told him about the pain!!!) Hopefully my nerves will soon mend and settle down :). Roll on summer ;) …..

  309. DS
    December 10, 2011

    Thanks for the page & all the comments as well, has helped leading up to the surgery. Had it yesterday, everything went well just waiting for pathology to confirm it was a pleomorphic adenoma (as the biopsy suggested pre-surgery). Home today, virtually no pain just very stiff and a bit of pressure on the side of the head/neck where the op was. Eating well and feel good. All nerves/facial movements are fine. Just want to let everyone know who are about to get this done, it’s not fun but don’t worry it’s not as bad as you picture it in your head. Just make sure you get the best possible surgeon. This is the key and worth finding the best. I can’t recommend Dr Chady Sader highly enough. He is based in Perth if anyone is in oz and looking to get this done. Good luck to everyone, I’ll keep you guys posted on progress over the next month. Thanks again.

  310. sharon
    February 16, 2012

    Hi,

    Ive just read all the comments left already & these have been really helpful. My husband has just been told he has this & will need surgery. At the moment we are waiting on the results from the FNA & he’s waiting for a scan so at the moment we’re on tender hooks waiting to hear if this is cancerous or not. Either way the consultant has warned surgery. He’s very nervous & I’m a wreck although trying to be strong (we have 2 young sons, 12months & 6 yrs) The waiting is the worst & Ive read some real horrors on the internet. This site has helped put some of the fears regarding the surgery to rest as its all very positive & not as bad as first thought but its still very scary. One question I do have is whats the likelihood this returning or is it once its all out & recovered is that it? Do you have follow up appointments & are you at a increased risk of this returning? Any help would be grateful. Many Thanks. From a worried wife!

    • admin
      February 16, 2012

      Hey Sharon,
      I believe I read the likelihood of recurrence is moderate. I have heard a number of people have the tumor return. However, it seems like there is usually a large gap in time, on the average of 10-20 years. I’m sure that depends on if they can get it all out. You will of course have followups as with any surgery but beyond recovery, I have not had to return yet. If it’s just a pleomorphic adenoma, then there’s not much to worry about at this time. Just be sure find a good surgeon that has done this before and who you both are comfortable with.

  311. Nanny
    February 19, 2012

    Thank you so much for this blog, it gives me a lot of information from the patient’s point of view. I’m having my surgery early april and my tumor is 6 x 3 mm with an elongated shape, displacing my carotid and pressing the facial nerves. I am very optimistic person, but I have to admit that I am scared. I want this all pass quick and I hope in God that it is all good for me as it has been for most of you here. I will post later after my surgery. Prayers are highly appreciated.

    Thanks,
    Nanny

  312. Gavan
    March 8, 2012

    Like many of you when I first sent to see my Doctor I was told it was probably just a cyst and not to worry but if I really wanted it out they would refer me. 4 months later I had heard nothing so mentioned to my dentist during a check up. He referred me right away and within a few weeks I was seen by a Professor of dentistry who diagnosed it within about 5 seconds. He was very upbeat, which helped. I had the fna biopsy which was fine, just a bit tender for a week after. Its benign as most are but obviously needs removed. I’m in for an MRI on Thursday and hopefully surgery within a few weeks. I’m 44 and I’ve never had an operation so I’m a bit apprehensive but I’m sure it’ll be fine. I work for myself so I’m a bit concerned about the problems of being away from work for any time but at the same time I know I have to look after myself. Its incredible to see so many stories and it does help to know that you are not the only one experiencing this. I’m a fighter so I’ll get through it and I wish everyone the best of luck and warmest wishes.

  313. Wendy
    March 20, 2012

    Hi! My name is Wendy! I’m 28 and was diagnosed with pleomorphic adenoma five years ago (age 23). Before I found out what it was the first doctor said it was a cyst and he would lance it and let it drain. Wow! I’m sure glad I didn’t let him do that. I just put it off. When I went to the dentist for a cleaning he was concerned and sent me to a oral surgeon. ( the tumor was located where my tmj joint is) the oral surgeon decided I needed to see a ENT. They did the FNA where they found it to be the pleomorphic adenoma. She sent me to a ENT surgeon. They cut me from the top of my ear and followed down my neck curving with my jaw line. They did a partial removel of the porotid and removes the 10mm tumor. My recovery was long. The had a drain in the inscesion the removed the day following my surgery. I stayed in the hospital one night. I had to wear this thing around my head to keep pressure on my inscesion. It was an elastic band. After being at home a few days my inscesion started to bubble out in one area. I went to the doc and it was sulava that hade formed a bubble. Every few days I had to have that drained with a needle. It took me about six weeks to fully heel. Also about 4 for my smile to straighten out. Five years later I still have numbness on my face and ear. About 1 year ago I felt another tumor. I was pregnant so my doctor advised me to wait and have it checked out. I had my twins in july and in August I had my MRI. There it was a tumor 7 mm. I set up yet another surgery. This go round I chickend out and put it off. I went back to my doctor this month because I started having pain in my cheek. I had another MRI and now I have many tumors, 8mm 3-4mm 7mm and 2.1cmx4mm. I have had two surgerys scheduled and my doctor has actually canceled them. He sent me to a radiologist and come to find out the ENT was just to scared to do the surgery. I have an appt. on Monday with a new doctor. I hope it goes well. I do have to go threw radiation after I have them removed. I just pray I make it threw this. I’m just very scared. Oh did I also say I don’t have any insurance this go round. God bless and good luck!

  314. Bob
    July 16, 2012

    I had this procedure for pleomorphic adenoma in April 2012. This website was a great help in letting me know what to expect. I had a three hour procedure at the hands of a very good ENT in Colorado.

    I ended up with the numbness you would expect (still hope for improvement) but no weakness or paralysis. I have some swelling still in the lower portion of the incision, the part on my neck. Not saliva, per ultrasound. No Frey’s syndrome yet. Pain control was hardly required, and I had great difficulty keeping the pressure dressing on: it slowly slid off.

    I do have some adhesions, where the skin is scarred down to the underlying tissues. Not a big problem, and I am loosening it up over time, manually.

    All in all, less of a stressful event that I feared. The biggest part was the lingering general anesthesia after effects: long after the pain was minimal, I was tired and taking naps.

    Thanks again to all the posters on this thread, and to the OP: please keep this site up. Many more in the future will want to reference it.

  315. John
    July 30, 2012

    Hey, I am also 24 and have just been diagnosed with a pleomorphic adenoma. It showed up out of nowhere in February of 1998 and my pediatrician at the time just nonchalantly told me that it was a swollen lymph node and not to worry as her daughter had the very same problem (seriously?!). So now 14 years later, having only thought it was just a permanently swollen lymph node and even occasionally joking in an Arnold voice “it’s not a tumor!!”, I at a routine check up asked my new physician what he thought, and he immediately referred me to an ear nose and throat specialist. Well I can be a bit stubborn, like my dad, so I never really followed up with contacting them for an appointment til a year later when I started having some unusual pressure in the area, and my girlfriend insisted I get the thing checked out, so glad she did so this time I listened and made the appointment.

    A CT, a month and a biopsy later I am now scheduled for surgery August 9th, 2012. After freaking myself out watching the surgery videos and the possibility of serious facial nerve damage on the Wiki I thankfully found this thread. Even though the general consensus is that chances are I will have at least minor nerve damage and a slight loss of feeling in areas, it’s really not as bad as what would happen if I left it in there. I’m honestly pretty scared about this because I am a server and hope this doesn’t make it to where I can no longer do this job anymore.

    Does anyone have any pointers as to what I should do before or after the surgery? What kinds of things should I ask my surgeon? Thank you in advance for reading this and to everyone who’s added their experiences and thoughts to this thread.

    • admin
      July 30, 2012

      There’s not much you can do before. If anything, go grocery shopping to buy semi-bland and easy to chew foods to last a few days. Post surgery, just relax. Sit in a reclined position but with your head up. Same with sleeping if laying horizontally is uncomfortable. You might want to ask your surgeon about recovery times as they seem to differ widely based on the replies here. I think you’ll still be able to do your job even if there is partial nerve damage. Just remember that you’ll be out for at least a few days and that you will have limited neck mobility (most likely anyway). Good luck.

  316. Tina
    July 31, 2012

    I am 6 months post op from a mixed benign tumor removal. I healed well and regained most of my nerve control although, I still have some paralysis in my upper right lip and numbness around the incision.
    Here is my question… Any help is beneficial.
    About one month after my surgery I started having pain on the other side of my neck, the side that did not have the tumor, and it felt like it was more in my throat where my tonsils should be. I had my tonsils removed when I was 15 and so I should not have pain there. I’ve been back to Dr. twice he’s done MRI scans and an ultrasound and it’s told me there is nothing there. At this point I don’t know why am having pain on that side. It feels like straining maybe? I also get little electric shocks on both sides of my mouth, where salivary glands are. Again, my dr has no reason for this. Oh! I also have ringing in my ear on the unaffected side…
    I am so scared its something else. I can’t compare one side of my face with the other anymore so I’m at a loss.
    Anyone else having this kind of trouble?

  317. Isabelle
    July 31, 2012

    Tina,
    You probably have the so-called referred pain, may be or may not be due to the surgery you had. You might want to consult your doctor or neurologist about this.

    I am here to share my own experience as a patient. I am a pharmacist. About a year ago, I felt a lump behind my right ear and went to see an ENT. Had CT scan done and was told it was a swollen lymph node and that I didn’t have to worry about it. However I have been seeing the same ENT every month initially, then 3-monthly just as follow up visits. In June this year, I noticed the lump had grown bigger and alerted my ENT. I then had FNA done and diagnosed with pleomorphic adenoma. I had the op on 27/7/12. The size of the growth is about 30x23x26mm. Today is day six and everything is fine with me. I have numbness on right ear and around the incision. Barely have any pain since the op. I can eat normal diet but I choose to have soft diet. I will resume work next Tuesday. I am glad my recovery is rather quick and I don’t have problem eating. My facial nerve is spared, hence no problem opening my mouth wide and opening my eyes. I am grateful that all of you posted and shared your own experience here because these did help me prepare myself for the op. Thank you!

  318. Scott
    August 7, 2012

    I am a 32 year old male from Australia. My story is very similar to the creator of this site, with a bit mixed in from a number of other stories. I had my surgery on 02/08/12 and am on day 5 of my recovery. All is going very well and I feel as if I could probably return to work if it was necessary. My tumor was confirmed benign yesterday.

    I found my tumor as a small hard marble shaped lump behind my right ear. It had been their for years but had very gradually increased in size and annoyance. Other than the small lump, my only other symptom was the occasional pulsating feeling of the lump when trying to sleep at night. The more I played with lump, the more annoying and noticable it would be to me. At one stage ages ago I even told my wife, “I feel like I have a tumor in my head” but never really thought it was. I eventually got over myself and got the courage to ask the DR about it. Like many others have experienced, the DR was quick to dismiss it as a lymph node (which was my self diagnosis). Months later following my wife’s instructions I sought a second opinion, as I literally was thinking I was imagining and creating symptoms and feelings associated with the lump in my head and kept trying to tell myself it was nothing. Sure enough, after an ultrasound, I was told it was a tumor that needed removal. As scary as that thought was, I was actually happy that my concerns were justified and I wasn’t going crazy.

    Fast forward only 2 months to today. The ENT surgeon I had was excellent and extremely knowledgable and professional. He described my tumor as large, very deep lobe, and that I could only feel the tip of the iceberg. The ENT was very happy with the surgery and that the entire tumor was removed and he suspects my chances of recurrence are minimal but will monitor me annually over the next 10 years or so.

    Realistically, the worst part about the entire tumor for me was the concerns about surgery and the ‘what if’ scenarios that played out in my head. That aside, all the tests (ultrasound, CT Scan, needle biopsy) were very easy and painless and surgery and recovery has been similar. I found having my wisdom teeth out to be a far worse experience.

    I found this website to be the best of all the ones I have found and the most informative in plain english . I felt it is my duty to share my ‘good news’ story for others who may be going through this in the future and hopefully instil some aspect of ‘peace of mind’. Although not an experience I would volunteer for, it has been easily tolerable.

    Cheers, Scott.

    • Sophie
      August 23, 2012

      Scott,

      Greetings from America. Our stories are very similar and I too have managed to spook myself over the “What if’s” even though so far all news has been good. The exception being, of course, that I have a large tumor in my neck that for over a decade was told was probably just a damaged lymph node.

      My surgery is next month and I hope that my recovery is tolerable. I thought having my wisdom teeth removed sucked but I survived it. Also survived a C-Section so hopefully this won’t trump either of those!!! My biggest fear right now is the general anesthesia (never had it before) and the concern (paranoia?) that my needle biopsy was wrong in its preliminary finding of no malignant cells.

      Good luck in your continued recovery!

      Sophie

    • Scott
      August 31, 2012

      Hi Sophie,

      I can understand your concern about whether your lump is malignant or not and general anesthetic. Your mind naturally reverts to ‘worse case scenario’ thoughts that dominate and control your mind. The reality of your situation is that going under general happens to thousands of people each day with very very few problems. I reckon at least 50 people went under general on the same day and hospital as me. Likewise, if your lump looks like and tests suggest it is benign – it is almost certainly going to be benign.

      You will be fine and will be able to look after your 10 year old son’s needs after 4 days recovery.

      Cheers, Scott

  319. Sophie
    August 23, 2012

    Hello all, I am soon to be joining this club.

    I am 40 years old and first noticed a hard marble sized lump under my earlobe about ten years ago. Mind you, it could have been there longer but that is just when I first noticed it. I was told it was a swollen / damaged / calcified lymph node and “no big deal”. Another Doc poked at it a few years ago and again told me it was nothing. Probably a lymph node or cyst that could be drained.

    Two months ago the lump was noticeably larger and started to ache. I could no longer sleep on my right side, etc. I did what any true paranoid person would do…. Googled “hard lumps in neck” and proceeded to totally freak myself out. Went back to my family practice doctor and insisted it be checked out further by someone else. Thank God!

    I was referred to an ENT who within seconds given the location of it, suspected a tumor in my parotid gland. They marched me right up for a CT scan and then back down for the lovely biopsy. They made three passes at the biopsy but did not numb it. Because the first attempt retrieved no viable cells to analyze, the next two passes she really dug around like crazy. It did hurt very badly BUT I would rather have that than to have them not get a good enough tissue sample at all. The Pathologist took a preliminary look at the tissue and everyone huddled around my CT scan and said they saw no obvious malignant indications which made me feel slightly better. Three days later I got the call, no malignant cells were pulled. It isn’t 100% certain until it is removed but so far, so good.

    So my little tumor friend who has been with me for over a decade is scheduled to be removed on September 25. We are a military family and the procedure will be done in a Naval Hospital. I liked my ENT and she has done this procedure before (I didn’t ask how many times…. Since I don’t have options on seeing a civilian doctor other than a lengthy appeals process, I decided just to go with this because I want it gone NOW. )

    My husband is currently deployed but because the surgery is listed as high risk because of the facial nerves and length of surgery, the Marine Corps is flying him home for a week to be with me. Five days is the exact time he will be here, obviously with at least one night in the hospital for me. That is what I was told to expect anyway.

    I have a ten year old son that I am caring for alone when hubby goes back. If my husband goes back four days post op should I be well enough to function in the most minor ways? I don’t need to run a marathon but I do need to be able to feed my child and not be a mess. Everyone recovers at a different pace but I was just hoping for opinions from those who have been there?

    Thank you for your time and bless you for all you’ve been through.

    Sophie

    • Sophie
      August 23, 2012

      I also wanted to add one thing that has made me feel a little more confident about the surgery. My ENT told me that typically she does surgery with herself and a surgical nurse. In my case however there will be another ENT assisting along with the surgical nurse. I figure two surgeons is better than one, right? :). She said this way one ENT can monitor and manage the facial nerves while the other removes the tumor. Now if they just give me a “Two for the price of one” discount….. LOL.

  320. marilyn
    September 4, 2012

    Hi All.
    I had this surgery in NYC Columbia Presbyterian Hospital.
    I am 2 weeks plus after the surgery. It was a but more extensive for me as my tumor was larger and deeper than expected . My surgery took 4.5 hours . There was the ENT surgeon , the chief resident and another resident in attendance .
    I was in the Hospital overnight and left when I felt able the next evening . I received morphibe pain meds throughput the night and day after the surgery.
    I was given Tyleno w/ codein but that didnt help so I was switched tp Percoset.
    I have some weakness in my eye , but that has geatly inmproved fromthe days or so after the surgery. I couldn’t close my eye all the way. They put in eye lubricant at night and I use drops in the day. I did have to tape my eye closed for about a week after the surgery so it wouldn’t get dry when I slept. But I don’t have to do that now.
    I still have numbness on my right side of face
    and ear , but that will probably go away as I feel its getting better already. I do have an indentation under my ear and a small lump in front of my ear not where the tumor was. The Dr said that will go away . I did have annoying pain but not constantly. The percoset worked and I took itbefore the pain got really bad. It starts to work in about 20 minutes. So now I am only taking advil. The only thing that bothers me is the tightness in my face and jaw . and I am just worn out from this . Dont think my symptoms are the norm only because I was under for 5 hours and had a much more extensive tumor than most people. But this too will pass. Everyone says I have improved 200% in the last few days. Hope you all are doing well. If you are having this surgery soon. Make sure you getsomeone who is both an ENT surgeon and a plastic surgeon if at all possible. I did and am very grateful.

  321. Jo
    September 20, 2012

    Hi All

    Thank you so much for all the info, really helpful. I am about to go through the surgery but have not decided on the surgeon yet. I am in Austin Texas and would like to ask how could I find out which ENT has the most experience in performing the surgery. It sounds like the nerve damage is very concerning. Could I get any recommendation of good surgeon in Austin or in Texas?

    Many thanks

    Jo

  322. Laura
    September 22, 2012

    I had a 1-2cm pleomorphic adenoma removed 5 days ago (monday 9-17-12) by an ENT plasctic surgeon. I noticed a pea sized lump under my ear lobe by the jaw line about 10 months ago. I immediately went to my pcp, who said due to your recent sore throat and cold lets watch it and return in 3 weeks. I did return and he said next step lets try heavy duty antibiotic for 14 days, could be swollen lymph node infected. Did that , and returned with no change. Next had a CT scan which gave me a diagnosis. 4 months passed from first appt to seeing ENT specialist with my CT results. He did a FNA for bx confirmation & ordered an MRI. Saw him again a month later and talked about surgery. He felt that this type of tumor being slow growing & relatively small, i could wait and enjoy the spring and summer. So, I did just that and now am 5 days post op. My doc pre-op told me minimum 2 wks out of work. I now see that that might be an understatement! We shall see come next week though! Surgery went fine, done about 4 hours. He said he took extra time to do something (don’t recall) to prevent using a drain after. I did so well I went home that day. Hadn’t expected that. Pain meds helped with the pain, but I had to stop them day 3 post op due to not being able to void completely. Potential side effect of narcotics. Well, ibuprofen has been helping ok. Sleeping upright is crucial but very unnatural and not conducive to a good nights sleep. My incision was not done the way it was explained to me pre op but was due to the location of the tumor and opening me up. It starts @ top of ear & goes down just a little bit then he went in through my ear and the back was incised from top back of ear and extends down the neck just before the middle of throat area. Quite more than I expected. Like I’ve read here, things like yawning and eating are a bit difficult, but not impossible. I did full lix diet first day and after I have been on soft foods. Brushing teeth is not a problem…just need to be able to open mouth a tiny bit to get brush in there! Showered 48 hours after and washed hair. Just don’t get incision directly under shower spray. Not liking the slow pace….have no energy and I am not a sit around hang out type! Ok so far day 3 post op the worst! Between the pain med side effects and the facial neck swelling increasing I was emotional and worried. Called doc Thursday and he said get off pain med and urination will return to normal and won’t feel groggy and emotional. Had to see him yesterday morning to evaluate swelling I described on phone. Turns out I developed an uncommon post op complication called “seroma” which is fluid filling the area that has left a space. He aspirated alot of fluid from various points on face and neck today with a 60ml syringe and needle after a bit of lidocaine. But it didn’t hurt as much as i felt pressure. I now have to use a compression dressing @ this area to help prevent recurrence. The dressing wraps around my neck and feels like a constant slow choking sensation. He asked that I keep it intact all day and most people cant stand it sleeping so if i want to remove for sleeping (which i did) and wear it all weekend he would be ok with that. Will see him on Monday morning to re-evaluate, but was told i might be unlucky again and require 3-4 treatments to drain the fluid. It’s been 10 hours since the appt today and even with compression dressing I can tell i will need to have it done again. Since the seroma development and the aspiration treatment, I have periodic bursts of very salty fluid sprays in my mouth. When doc was aspirating seroma, the taste was a mix of salt and blood and he said that is exactly what the seroma is. Now its just straight salty fluid especially with compression and eating. It’s a strange affect and unexpected so it makes me need to cough when the bursts occur! Its Saturday morning day 5 now & I am not looking forward to another boring & uncomfortable day! All in all, I would have to say that none of this was explained in this detail or expected & frankly I think I would rather have waited and monitored the growth more before jumping in to have it removed. Although my family and friends thought waiting the spring and summer was irrational! However, doc said ok to wait & it was determined to be what it was which is slow growing. Well, maybe i will feel differently, when i turn a corner here! I just think that the operation and recovery is totally underrated in difficulty and patient’s need to be better informed. I do like my surgeon and his PA, and they did inform me of the complications risks recovery swelling numbness etc… but they need to tell it like it is…be more realistic. I was not and still am not prepared for the extent of the ear numbness. It’s almost to a quality of discomfort I could say goes beyond numbness and into pain! Anyway, I haven’t been able to find much of this seroma thing on line. Being a 5% complication, I guess many of you did not experience it. I am happy for that. Post op swelling is enough to deal with never mind looking and feeling like you have 3 faces & necks attached to you. One of my goals is to be able to sleep on my right side fetal position with my tempurpedic neck pillow! I am a baby when sleep deprived and this whole sleep issue is not working for me: sitting up at an angle @ least 45 degrees, on the left or back….just isn’t working for me & it’s getting old! Well, great site to get informed, share and vent. Good luck to everyone. Oh one more comment & concern about incision. My husband tells me the front small area and the large neck area looks good, but he is worried about the part behind my ear @ the top. He said its like black color and looks like the are is dying???? Can anyone comment on that? The PA saw it yesterday and just said to keep applying the antibiotic ointment 2-3 times day. But Husband is not so relaxed about it……thanks and have a great day!

  323. Sophie
    September 30, 2012

    Hi Laura,

    I am currently experiencing some of what you mention here so I wanted to let you know you aren’t alone! I am Day 5 post op and got very discouraged today because I seemed to be going in the opposite direction. I hurt worse today than I did on days 2-3 and the swelling had gotten bigger and was very hard across my jaw and neck. The pain meds which had controlled my pain to this point suddenly weren’t even touching the pain and discomfort.

    I finally called the hospital who patched me through to my surgeon and thank goodness I did. The “swelling” and increased hardness and pain was from a seroma. The entire area where my tumor was had filled in with saliva (gross!) to the point of no more capacity. It was stretching against my internal sutures, etc. I was thankful that I wasn’t just imagining things or being impatient with my recovery time. The seroma had to be drained with a needle and based on the size of it, the surgeon feels that I will likely need to have it done again soon. She said at some point soon my body will finally learn to compensate for the fact that half my parotid gland is now gone and will burn off the excess saliva on its own. Not fun and not everyone has this but it is not totally uncommon either!

    I also have a black patch on part of my incision that she assured me is normal and it is a thick scab and to leave it alone. It will fall off on its own when the time is right and the skin underneath will be new and one would assume a normal color. :).

    I was feeling okay before this seroma got large so I am confident that with it now being monitored I am back on the right track. Just still waiting for biopsy results. I am trying to be patient with that but really how long does it take??? LOL.

    Hang in there, vent when you need to. Everyone here is going through (or has been through) the same exact thing. For reference, my tumor was 2.5 centimeters and surgery was 3.5 hours. I had no facial paralysis just some minor quirks with my mouth. My ear and side of my face are totally numb which I expected, thanks to this site. The only complication (other than the seroma) is the tumor was longer than they expected and was sitting right on my eye nerve. They were unable to “cuff” that side as they said because of the potential for nerve damage there so they peeled off the tumor on that side and didn’t take any surrounding tissue as they normally like to do. They said that this just means my chance for re-growth is slightly higher than it would have been otherwise. I can live with that.

    Hang in there and all the best wishes for you!

    Sophie

    • Laura
      October 1, 2012

      Hi Sophie,
      Glad you are feeling better! I am now 14 days post op and have another appt this morning. I have had the seroma drained 3 times last week and a new type of compression dressing was applied 4 days ago. It seems to help until I take it off for any length of time and it refills with fluid fast!.. The pain is manageable, but the constant choke hold with this dressing is very uncomfortable! Its beginning of week three and I am still not cleared to return to work this week. This situation is getting me down and impatient. It was supposed to be a one week thing and back to work! I am young, healthy, take no meds, work out, and even my surgeon keeps saying how surprised he is that I am going through this as the surgery went so well with minimal bleeding. I don’t want to wear this choke hold dressing anymore. It only stops the fluid from filling up again when I wear it, but when I take it off, it returns to tennis ball sac! If it’s going to develop, why wear this very uncomfortable head/ neck wrap? Well, I see the doc in about three hours. We’ll see then what he says today….day 15! Thanks for writing :) Stay well.
      ~Laura~

  324. Heather
    October 5, 2012

    Hi Everyone,
    I am so nervous right now because I still don’t know what is going on with me yet. In December of 2010 I had some other health issues that required a pet/ct scan and caught my parotid gland lit up. A few months later in May of 2011 I had an MRI which showed an 11mm nodule in my parotid gland, but was never told what to do, maybe just wait and see I dont remember. Well last month I started thinking about it and thought I should probably check on it again and was kind of concerned because it is achy and painful. I went to an ENT and he ordered an ultrasound which showed a 15 mm nodule or tumor so its grown 4 mm in a year and a half which according to my doctor isn’t a lot but I’m worried he is just saying that so I don’t freak out. I have also started realizing this may be causing more problems than I think like sinus pain, ear pain, and feeling like I have a cold. This is scaring me and making me think its cancer and has spread like everywhere. Just curious if other people had these symptoms too. I am sorry if you already posted these symptoms and I missed it, but I am just really nervous right now and wish I could just go down to the hospital right now to find out what is wrong with me.

  325. Sophie
    October 7, 2012

    Hi Heather,

    I can tell you to not freak out but when people said that to me, I only freaked out more. I am a knowledge junkie and did so much research beforehand on my parotid tumor. A lot of that information can be quite scary when you don’t know really what you are dealing with, only that something is growing inside of you that shouldn’t be there. The best I can do is tell you what happened to me and hopefully it will reassure you somewhat.

    My tumor was present for over ten years but was misdiagnosed time and time again. By the time I was finally referred to an ENT it was only because I insisted it be checked out further. My parotid tumor was 2.3 centimeters and because of the length of time I had it they were concerned about malignant turn from a benign situation so my surgery was scheduled and proceeded quite quickly. They found upon removal that my eye nerve was fully involved. They actually had to peel the tumor off of it. That being said, I suffered no lasting nerve damage from the surgery and now at 12 days post op, I am healing nicely and my pathology confirmed a benign tumor. Yay!

    In the last year of my tumors life in my body it grew noticeably. It went from a hard marble to a larger hard ball. It also began to ache. I never had problems sleeping on it but in the last year could no longer sleep on my right side or I would wake up really hurting. I ate ibuprofen like they were M&M’s. It is not only possible to have a benign tumor grow in size but also because of the facial nerves in that area, pain or aching is not uncommon. The odds of it being a benign growth are certainly in your favor. Most of these are benign in that location.

    That being said, any growth in your parotid needs to come out. The waiting is worse than the actual doing. Find someone very experienced in parotid tumors and also someone who will answer your questions honestly. You may not always like the answers but information sharing between you and your doc is important. If you don’t have that, find someone else!

    I had your symptoms and mine was benign and I am now tumor free. Best wishes to you.

    Sophie

  326. Marcy
    October 7, 2012

    I just had a parotid tumor removed last Thursday and at first everything seemed to have gone well. I had seen an ENT originally but because my daughter had a malignant tumor in a smaller salivary gland I ended up going to her doctor who is a oncology surgeon but said he specialize in head and neck. Now, I am starting to worry that I may have made a mistake by not using a board certified head neck surgeon . The first doc, the ENT, really stressed using a board certified specialist and I did not even realize I was not until after the surgery was over because I had asked about experience and the doctor I did use said he did 35+ of these a year.

    The reason I’m now concerned is because of some of the post-surgery symptoms I’m having and want to know if anyone else has experienced these. The doctor said none of the facial nerves were affected except for the lowest one, and that was stretched somewhat but should recover. He said that I might have difficulty moving my lower lip and I’ve noticed a slight change but not bad. However, the other things that are more worrisome are ones that he did not indicate should be a problem. I have numbness not only in my ear lobe, but about halfway up my ear, and also along my jaw where the incision is. Also, my ear feels like there is water in it – constant pressure that isn’t really painful but definitely very annoying. And, starting today I feel like my forehead is tingling and my eye is watering a little. I definitely can move my forehead, eyebrows, eyelids (to blink), etc. so maybe I’m worrying for no reason!

    Would just like to know if anyone else has had this numbness and ear problems or any other post -op symptoms that seemed to show up several days after surgery.

    Thanks! Marcy

    • Stevie Evans
      December 22, 2012

      Hi Macy, I’m having the same problems with my ear (procedure carried out 3 weeks ago). Does it get better?. going to put in drop otex to see if this helps!

  327. Sophie
    October 8, 2012

    Oh yes, Marcy. That and more. :).

    I cannot feel my right ear at all, completely numb, and I had a board certified ENT. The side of my face is numb, hard and swollen. I have pain in one eye, my jaw, the back of my head. It feels like someone punched me in those places. My jaw and eye are in reaction to the electrodes that monitored my facial nerves during surgery. The back of my head was from pressure from something else. My surgeon explained it but honestly I was in such a fog, I can’t remember what she said, only for me to expect pain in the back of my head.

    I am 13 days post op and experiencing everything you are. I am not a doc but I would say this is all normal recovery. The ear feels weird, doesn’t it?

    Sophie

    • Laura
      October 9, 2012

      Hi Sophie, & others!
      I am now 23 days post op and 4th week out of work due to ongoing seroma complication requiring aspirations and continued compression dressings 22 hours a day. Although I dont have much pain, I am not going to wear the head wrap to work. It can get very uncomfortable during the day.

      The numbness is decreasing each week. I am starting to get some feeling to the top of my ear and middle of face. It’s still quite hard and numb the closer to my jaw and ear.

      I also have a noticeable indentation on the side of my face that surgeon said was permanent from where the gland and tumor sat. It looks quite disfiguring!

      He told me he did place aloderm in there but you can only place so much.

      Will this seroma ever resolve!!!!!!!!!!!! Just a bit frustrated @ wearing a complete head wrap for compression for three weeks now!!!!!!!!!!!!!!!! And having this fluid under my skin for so long! It is less from the last two weeks but this is really a long time. Does anyone else have this problem and what is your treatment and prognosis?

      Thanks and have a great day!

      ~Laura~

  328. Jacqueline
    October 12, 2012

    Hi all

    Thanks for your contributions, and as a matter of gratitude I’d like to share my experience as well. I had a surgery to remove pleomorphic adenoma (approx. size 11x11x14mm) on 9 October. I was put to sleep at 1pm and woken up at 3pm. Was told the actual surgery was only an hour and 10 mins, relatively quick. I had a small tube attached to my neck to drain blood, and according to the doctor and nurses, the quantity was small. My cheek and ear were numb and swollen though. The tubing was removed on 11 October when I was discharged from hospital.
    Today 13 October the swelling has gone down a bit but there’s still some around the incision area (on my neck). Appetite is normal, feeling no pain, only tightness. Looking forward to normality!

  329. Richard M
    October 14, 2012

    Hi All. So glad I found this group. Had my surgery on Oct 11, 2012 in Connecticut USA to remove my pleomorphic adenoma so I am 3 days post-op. Surgery ended up lasting 4 hours because the growth was farther forward than they expected and my ENT Surgeon had 3 branches of the facial nerve to trace to avoid damage. I was discharged the same day as my surgery with a drain tube in place. As with many others, the elephant ear feeling is very annoying and the tightness along the incision goes from annoying to painful when I eat. Fortunately everyone on this blog helped me prepare for that and I stay ahead of it with the pain meds. I have also taken the advice of others and slept sitting up. I had a slight loss of control over the left half of my upper lip but that is starting to subside. Eating and brushing teeth are an effort as everyone has pointed out. I am scheduled to have the drain tube removed tomorrow. Again, thanks to everyone here on what to expect with that. Looking forward to taking a much needed shower! I haven’t figured out how I’m going to shave yet though. Looking forward to the elephant ear feeling to subside but know from this group that it could take months. Counting my blessings and hopeful my recovery continues in a positive manner.

  330. Amanda
    November 14, 2012

    Hi all,

    I am 26 years old. Thank you for sharing all your experiences it is helpful hearing other people’s stories.
    I am having my second operation on 30th November 2012. I had it removed along with some facial nerve in 2006. Apparently it is not uncommon for them to return.
    I had some numbness in the side of my face and my ear lobe but other than that I had no other problems. The scar healed very well and is hardly noticeable. 6 years on and the numbness is practically gone!
    I found another lump in February of this year. I am devestated after going through this already to have to start again.
    The doctor has now asked me to consider radiation treatment since it has returned. However this is risky because of my age.
    Has anyone else been asked to consider having radiation? I’m struggling to make a decision.
    Good luck to everyone Xx

  331. Beth
    November 22, 2012

    Hello Everyone,
    I had my surgery one week ago today. I have to say that reading what you all had to say is helpful because I was feeling really old and sissy because I did not find the recovery to be particularly smooth and painless. First of all, I suffer from migraines and on the morning I arrived for surgery I had one. And so, when I woke up from anesthesia I still had one, and days worth of nausea to go with it. The pain from the incision was not an issue until about 2 days later. At that time, I found that any action that led to blood flow to my face resulted in horrid shooting pain. Certainly got my attention.
    I had my surgery in CT at St Raphael’s/Yale Hospital with Dr D’Agostino who I am very satisfied with. I have no real noticeable facial nerve damage after a 3 hr surgery. But, I cannot feel that right ear too well. :D But I am sure the feeling will return.

  332. mayra
    November 30, 2012

    Thank you so much for all the info. I want to find the right and best doctor for my surgery. I need help! and info for the best specialist!

  333. Glenn
    December 2, 2012

    Hello everyone I hope all is well. I am going in for my fourth procedure sometime in 2013. Has anyone had there tumor regrow this often?

  334. Amanda
    December 4, 2012

    Hi Glenn,

    I am so sorry to hear you are going in for your fourth procedure.
    I am four days out of surgery from my second procedure. My recovery is going well.
    My surgeon thinks he got all of it out so I am hoping I won’t need anymore surgeries!
    How long has it been between each of your procedures and have you had a partial parotidectomy? How are your facial nerves.
    Laura – hope you feel better soon Xx

  335. Javier
    December 14, 2012

    Hi Everyone,
    Thank you so much for sharing your experiences, I didn’t expect to find so much information and support in a normal-people language. Having this blog is a great relief.
    My name is Javier and I’m from Winnipeg, Canada. About a couple of weeks ago I went to the emergency room because of a bad throat sore. I expected just some antibiotics because 10 and 5 years ago I had an abscess in the same location and in both cases antibiotics worked just fine. The doctor said that I may had a flu or cold but he was concern about a “lamp” in the left part of my throat. He examined me by using a camera through my nose and took a sample to send to the lab and then a CT Scan. All procedures were painless. Yesterday the doctor told me that I have a pleomorphic adenoma which is a benign tumor (thanks God!). I am waiting now to see the surgeon.
    A have some questions for the ones that already got the surgery
    How big is big? According to the CT Scan my tumor is between a golf ball and a tennis ball
    Did someone experience permanent or long term damage in facial nerves?
    The doctor mentioned a possibility of change of my face shape, did it happen to someone? My tumor is not visible; I really don’t understand how something as big as a golf/tennis ball can be hidden and what will fill the empty space after the surgery
    There are some comments about the cold weather, I’m originally from Argentina and been in Winnipeg for 10 years, but I think I will never get used to the winter here! Is the cold weather a big issue?
    Thanks in advance for sharing and for the info.

    • Amanda
      March 11, 2013

      Javier- I too had a golf ball sized tumor in my parotid which had partially attached itself to a portion of my facial nerve. The surgery took about 5 hours and I recovered quickly and was back to work within a few days. My facial paralysis lasted about 2-3 weeks. My second surgery was a bit more complex and consisted of 10 tumors ranging from 1-5cm in diameter. This surgery took 20 hours and I was hospitalized for a week. Facial paralysis with the second procedure lasted close to 3 months. They also had to do some reconstructive surgery to my face, taking a transplant of tissue from my arm into my face because they had to take so much tissue out with the tumor removal. The shape of my jaw is different and my ear is a little different as well. I was told that I can have more plastic surgery work done to improve the look of my jaw line. I haven’t noticed any issue with the weather.

  336. Stevie Evans
    December 19, 2012

    Had the procedure 2 weeks ago to remove a ‘Warthin’s’ Tumour, and experiencing a lot of what has been said. I have 2 questions. 1. Will my ear ever feel like it belongs to me again and not some false object stuck on my head?
    . 2. My other half and I are going off to warmer climates for a few weeks. Should I keep wound site out of the sun or would it benefit the healing process re scar?

  337. Clive from Zimbabwe
    January 5, 2013

    Hi

    I had a benign tumor removed six weeks ago and found all the information on the site very useful.
    One major question which seems unanswered – what causes the tumours? I have been told that my condition is bilateral and I would like to avoid similar surgery on the other side .. Thanks

  338. kylie
    January 27, 2013

    i just wanted to say thank you for sharing your experiences. 7mths ago i found a lump behind my ear, seeing as i was pregnant i was told to look into it further after bubs is born as most likely cyst. 4 doctors told me it was a cyst nothing to worry bout but now it is growing. My baby girl is now 4and half mths and i have just had a biopsy. now they say it a tumor and needs to come out. waiting on surgey and dont know when that is going to happen. thank you all as now after reading what i have i feel heaps better.

  339. Melissa
    January 27, 2013

    Thanks for sharing your experience Brandon! This is extremely helpful information. I’m surprised at how many people have gone through the same thing! My surgery is in 5 weeks time.

    One thing you mentioned was that you have had acne most of your life. Do you think this is related to the tumor? If so, did it make any difference to your skin when you had it removed?

    I developed acne when I was in my early 20′s and I’m in my early 30′s now. So I’m interested in hearing if the surgery had any impact on yours??

    • admin
      January 29, 2013

      Hi Melissa,
      By the time I had the tumor removed, my acne was pretty much gone. I wouldn’t think there’s a correlation but I’m really not sure.

  340. Yani from Singapore
    February 9, 2013

    Information shared has been very helpful. My surgery was done on 4th Dec 2012 by Dr Stephen Lo DC from Tan Tock Seng Hospital (great ENT department). Doc’s explanation of disease and possible risks/side effects involved during/post surgery was concise. Post surgery experience similar. Minimum scaring as cut was along the concur of ear and neat sutures. Drinking Maluka Honey and Vit C effervescent helps.

  341. sabine
    February 17, 2013

    Hi, had the same surgery 3 month ago. My ear still feels like cardboard and the recovery therefore is slow. Other than that I felt it’s not such a big deal beside arising fear it will happen again and happen also on the other side. My surgeon said that this has never happened in the 25 years of his business. I guess fear has no place here as it’s out and you have no influence in it anyway as no one can tell you where it comes from. i do a LOT of yoga and went back on the mat 3 weeks after surgery but noticed that any postures on the neck are limited now. I would recommend to get a good yoga teacher to teach you how to correctly do the shoulder stand as this one is very beneficial for lymph drainage. I also started to take kelp supplements as they work and loosen hardened masses anywhere in the body. Worth a try I guess. sabine

  342. Mary
    February 25, 2013

    I had my surgery at end of November 2012. All went well at the time but as my scar healed and clips and stitches removed I had a salivary fistula which meant I had saliva coming from behind my ear as well as saliva in my mouth!. Not pleasant. I was then prescribed patches to dry this up which then affected my eyes. My eyesight deteriorated quite badly. I got new glasses but then my eyes have now come back to normal which kind of makes new glasses redundant. I also have the numb ear which is irritating more than anything. This morning though was very cold and I felt extreme pain in my ear. I had forgotten to put my hat on leaving home for the walk to work. Won’t make that mistake again.
    When I had the CT scan they discovered calcified nodules on my thyroid to that is the next part of my saga. Have an fna ultrasound in 2 weeks time. Could be worse but could also be better. Found a lot of comments here very helpful and reassuring.

  343. Chris
    March 3, 2013

    I have just been diagnosed with a benign tumor in the parotid gland, at the tail end of the gland. I have been reading about a face-lift aproach with a suerficial musculoaponeurotic system flap in parotidectomy. From my reading the incision is not as large in the cheek/face area.It goes behind the ear. Has anyone had this procedure done? The ENT I consulted wants to do a Blair S cut which is the cut along the jaw line. I am terrified of this entire procedure and honestly do not want a scar 6 inches long on my face.
    How long is the recovery? The doctor I have seems to think that I will be able to go back to work after only 1 week. I am not sure about that either. I
    I know this tumor needs to come out, but I am terrified of the entire procedure and the after effects. I have never had surgery or stiches or been in a hospital other than the deliveries of my children.

    • Melissa
      March 11, 2013

      I had this procedure done a week ago today. I’m still feeling tired. I think a week off work is a tad ambitious. My doc has said I’ll need two weeks of in home care. I was terrified about the whole thing too. I was in tears on the operating table but that was the worst part. The only other time I had been to hospital was to have my son too. So I completely understand how you feel. Hope it goes well for you. :-)

    • Amanda
      March 11, 2013

      Hi Chris… I had the face lift type incision during my first surgery for pleomorphic adenoma removal which took about 4-5 hours. The incision looked great and healed amazingly. No one ever noticed. I was back to work as a waitress within 3 days after surgery. The facial paralysis lasted a few weeks. It was all very easy. I did end up with the cheek sweating thing though, which is strange but not uncomfortable or anything.

  344. Jane C
    March 10, 2013

    My surgery was one year ago. I have pressure in my head. ,some time more than others. Has anyone experienced the same and will it pass or do I need to see the doctor?

  345. Melissa
    March 11, 2013

    If anyone is interested in watching the procedure here is a link

    https://www.youtube.com/watch?v=AWyLcMqZ8U0&feature=youtube_gdata_player

    Warning: it is rather graphic and may be quite distressing if you are having the procedure done.

  346. Melissa
    March 11, 2013

    Also my doc told me that Frey’s syndrome, which is the seating when eating can be resolved with a few treatments of botox. So it’s not something that you have to l live with if you don’t want to. :-)

    • Melissa
      March 11, 2013

      ‘Sweating’ when eating, not ‘seating’ when eating. I think most people do that. Lol

  347. mae lynne
    April 1, 2013

    I was wondering if anyone that has had this operation and also had a facial rejuvenation procedure done at the same time. There is a Dr. who does this in Los Angeles. I need to have an Parotidectomy done and thought I would look into having a necklift at the same time. Any comments?

  348. Brenda
    April 9, 2013

    Hi everyone, i had a deep lobe total parotidectomy done a week ago 4/1/13, the problem now its that i have facial paralysis and im terrified about it … I can’t smile and my eyelid and eyebrow wont move. Has anyone gone thru this? How long does it take to go back to normal? Please let me know if there’s anything I can do to regain movement of my face.
    Thank you.

  349. Kristen
    April 20, 2013

    Brenda or anyone else, seek out patientsforum.com. This is a fabulous forum with so much support. You can post questions and get many many replies within an hour. Best of luck to you all!

  350. Kristen
    April 20, 2013

    I forgot to mention, this forum is all people who have had parotid tumors removed…both benign and cancerous a d are there to support anyone. I found this site extremely helpful when I had a tumor removed with my submandibular gland 5 weeks ago. I found so much support and comfort there.

  351. Mary
    April 22, 2013

    I just had a pleomorphic adenoma removed last week, and it was my second surgery. The first surgeon said I had a 25% chance of recurrence, and after about 17 years, it did. He had left some tumor on the nerve to avoid facial paralysis. When I noticed it three years ago as a pea-shaped lump next to my ear, I took the advice found on one of these support sites to “find the best surgeon I possibly could,” and am so glad I did, instead of going with a doctor I really liked, but with some red flags, I chose one in Houston, whose name I got from my grandsons’ ENT. After a consultation, I decided to go with him, and my surgery, as far as I know, is a complete success: all the tumor is gone and no facial paralysis. I do, however, have a slight indentation on the side of my face, but my hair covers it. He has a conservative approach to post-op care, and an excellent bedside manner. I even liked his anesthesiologist, a very reassuring and informative doctor. I had to go out of town for treatment, but it was worth it. Of course, every case is different and no guarantees can be made before they go in there, but I am very pleased with my outcome.

  352. Rachel
    April 23, 2013

    hi, I first found a lump behind my ear when I was 13 it was only the size of a pea and the doctor said it was just a lymph node. after it still being there 18 months later I decided to go back and straight away she sent me to have ultra sounds and an FNA because it had grown considerably. the results came back that I had a benign pleomorphic adenoma that was 2.5×1.4×1.4 which I had no idea what that meant at the time. I am now 16 and am due to have the surgery on the 16th of may. I’m really worried about having the surgery because of its complications and because I will miss quite a bit of one of my senior years at high school. also my family only has public health care do we have no say in what goes on I have not even met my doctor and we have had 2 appiontments cancelled on us now. I have also found that my tumour aches and that my eyelid on that side twitches a lot. also the doctor said it is very rare to have a tumour at this age especially with the rate it’s growing. thank you to all the people who posted comments as I understand a lot more now and I’m not as scared.

  353. Lena Charlotte
    May 11, 2013

    Hello!
    My name is Lena Charlotte,I´m from Norway. I discovered a lump behind my left ear for 2 1/2 years ago. Went to ENT specialist and was diagnosed with pleomorphic adenom in salivary gland.

    I was terrified and because of that postponed surgery until this year. I finally had my surgery April 15, 2013. Everything went well but a couple of days later an infection arised in a pocket behind the ear.

    Therefore I´m now on my second antibiotic treatment, hoping it will put an end to it soon .I also have salvia leaking and leaking, it never stops. Anyhow, I had a lot of pain for a couple of weeks..

    As many other\s I have also experienced a numb perception in the lower part of my ear and stiffness in my neck, and around the incision area.

    I am so glad it all went so well, that my tumour was benign, must mention, I find myself apreciating little things much more now than before.

    The reason for these tumours to come into existence, after a lot of reading, is blocked salivary glands,smoking or radiation.

    Thank you so much for this site, thought I was alone, but I´m not.
    I wish you all the best of luck.

  354. lety
    May 13, 2013

    Hi I have recently been diagnosed with a pleomorphic adenoma in front of my left ear. the Ultrasound showed it was 19mmx14x14. i am a bit of a stress head and i am freaking out. i am due to have a FNA tomorrow. but thanks for the posts they have been really helpful and have eased my fears a little. I am currently being treated by an oral maxillofacial surgeon, should i ask to be referred to an ENT. did anyone have tingling prior to the operation.

    • Chris
      May 13, 2013

      Sorry to hear that you have to deal with the condition. I just had my surgery done about 3 weeks ago for the same thing. Personally I would look for/ get referred to an ENT. They are normally very famailiar with this sort thing. If you are not sure who you want to go see for this you can always use http://www.healthgrades.com. If you happen to be near the Memphis area I know a great one that can take care of you. Other then that don’t be afrade or stressed. This is a pretty simple procedure for the patient and I know that you will do just fine.

  355. Blake
    May 15, 2013

    I have a Pleomorphic Adenoma, I have not yet setup a surgery to have it removed.

    I just wanted to ask what was the average size of the tumor? mine is about 1.5 inches long and half a inch wide, it is very long and sorta lumpy.

    I’m terrified of the facial nerve damage.

    I found the lump when I was about 15 (I’m 20 now) and the doctors told me it was just a enlarged lymph node, I recently went to a another doctor because it has gotton much larger and much more annoyed and he said it was a Pleomorphoc Adenoma and that I would need surgery to remove it.

    Are the chances for the nerve damage high?

    I’m quite scared and I feel the 5 year time from when I discovered it til now may have made my chances much worse.

    • lety
      May 15, 2013

      hi Blake, just a question, did you have to have a FNA? how did they diagnose it? hope all goes well, this site is pretty helpful. i found mine five moths ago and it has been growing since.

  356. lety
    May 17, 2013

    hi there, i have just had my results from my FAN and they were inconclusive, i has left me feeling a little rattled. anyone else with similar experiences. I am due to see an ENT tomorrow for more tests. any advice?

  357. Luanne
    May 20, 2013

    In 1992, I had a “mixed parotid tumor” removed by “excision of Left Parotid Mass Partial Parotidectomy” (Superficial Parotidectomy). I am cleaning out old files and came across this paperwork, and am looking it up on the net to see if I should expect any after effects all these years later. (I had a splenectomy in 1976, and they said no after effects, but that was not exactly true!)

    I was 38 years old at time of surgery. I had noticed the lump actually years earlier, and my dentist and family doctor said it was nothing each year.. I believe it was the dentist who finally said maybe I should see a specialist. I did and got freaked about possibility of cancer and/or facial paralysis…. but, everything is fine now. All the feelings of numbness went away after time (1yr+?). Can hardly see my scar. I had a choice of using an ENT doctor or a plastic surgeon, and went with the Plastic surgeon, who did a wonderful job (Vernon Turner, MD Ft. Lauderdale).

    Surgery was done right before Halloween, and I dressed up as “Bride of Frankenstein” for a Halloween party in South Beach, Miami. I had some VERY REALISTIC stitches/scar down the side of my neck!!

    I am feeling very blessed that it had such a small impact on my life. You will get through this better than you imagine! Enjoy all the attention you get, and move forward through it!!

    • Steph
      October 26, 2013

      Luanne,

      I really appreciate your post! One of my biggest worries is recurrence. I am having my surgery this Tuesday and am hoping this will be the only time I ever have to have this done! Your positive outcome is inspiring to me!

      :) Steph

  358. Jennifer
    May 22, 2013

    Hi,
    I had a (hopefully) benign parotid tumour removed nearly 2 weeks ago. After a few days of pain, especially when eating anything too tasty, I’m feeling much better. The tumour was behind my ear so I have the typical S shape cut that goes round my ear and down my neck. The part behind my ear has not healed yet and continuously leaks. I think it’s just saliva coming out as it is clear and gets worse whenever I eat.
    Just wondered if anyone else has experienced this and how long it took to stop?
    Thanks,
    Jennifer

    • Katie
      May 31, 2013

      Has your saliva stopped yet? Mine hasn’t

    • Christie
      June 25, 2013

      Jennifer, I am twi weeks from surgery today. I had to go yesterday and they aspirated the saliva that had built up around the incision around the back of my ear. Helped tremously with the swelling that had happened over the weekend, apparently due to the saliva collecting when being activated by eating, I go back for a recheck on Thursday. Until then back to very bland soft foods and I have to hold that area with pressure when I eat for now. I did not have any leakage like you are experiencing, just wanted to let you know about the aspiration for the seroma.

      Hope your better by now. Overalls how is your eating now?
      I also have to go for radiation. Was this ever mentioned to you…trying to get some feedback on that.
      Thanks, Christie

  359. Katie
    May 25, 2013

    All the comments on this page are very helpful. My experience is very similar to many on this site. I discovered my lump about 6 years ago. My doctors were nor concerned at all and said it was probably a swollen lymph node. A few months ago I went to an ent for a hearing test and a ear infection. It was my ent that said he was concerned with the lump and sent me for a mri. The mri results showed i had a mass and then I was referred to my surgeon and sent for a ultrasound guided fna. The results showed I had a pleomophic adonoma tumor and my surgery date was set. I had my surgery on April 23. Everything went well. I did not have any facial paralysis and i only needed to miss 6 Days of work. The scar looks great and is only a small s that hugs my ear. However, i am also suffering from a complication called salviary fitula. Every time i eat, saliva drips from the incision cite. Its very embarassing and i often dont feel it until its half way down my neck due to the numbness. My surgery was just over a month ago. My doctor was it should dry out but i am losing hope and its driving me crazy! I have read that a few of you have experienced this too. Has this condition stopped for anyone?And did you treat it in any way or did it go away on its own? Thank you so much for any help anyone can offer.

    • Kristina
      December 1, 2013

      Hi Katie, not sure if you’re still checking this post but if so, how long did the leaking last? I had my surgery 2 weeks ago and approx 10 days later I had the same problem of fluid leaking from the incision and down my neck (especially when eating). Looks like you had your surgery approx 6 months ago. Any way you could provide a progress report? I’d really appreciate your comments/tips on how to stop the leaking. Thank you!!

  360. lety
    June 3, 2013

    My lump is now a possible Warthin’s tumor, has anybody had any experience with this type of tumour.

  361. Katie
    June 23, 2013

    Hi guys

    Thanks for sharing. I’m in Sydney, Australia and had adenoma plem removed on Thursday by Dr K Shannon a head and neck surgeon – awesome dr. I only noticed lump in April, had ct scans , needle biopsies etc to confirm it was benign and then found this dr through a medical friend and had it done and stayed 2 nights . It’s taking more out of me then I thought it would . Tow questions

    1 how many days did most of you keep taking panedeine forte ? I’m on my 3rd day and want to stop soon as making me constipated!!

    2 how long before anyone did any exercise ? I do something normally everyday – run, swim , gym so am itching to get active again and due to run a half marathon at golf coast in 2 weeks

    Kk

  362. Christie
    June 24, 2013

    Hi, 2 weeks out from surgery. This is the third regrowth in 7 years. The first two removals were done thinking it was a cyst. The second pathology showed it was a pleomorphic adenoma. I saw an ENT/head and neck surgeon last August. We Watched the area with MRI’s and decided to go forth with the paridectomy. After a 6 hour surgery and over night stay I have healed for the most part with no bruising and the scarring is already looking really good. She removed 80% of the parotid gland and old scar tissue from other surgeries and tissue in the jaw area. i still have no movement around the right nostril and right upper lip…however hoping this is muscle trama and not nerve damage. time will tell….The tumor was benign ..praise God…showing branching to multiple sites and radiation is now recommended. I will see a radiologist soon to discuss treatment and make some decisions, any advise or previous experience with this would be so appreciated. I am apprehensive, but my Surgeon has been amazing and so compassionate. I have a good trust factor with her. I have some questions and want to be sure this is in my best interest for better life quality and no regrowth from any existing cells.
    I did start experienced some swelling over the last three days and went in today and I had a seratoma, saliva build up and it was aspirated and I go back in three days for follow up. I am to remain eating soft bland foods and hold pressure on the gland each time I eat…my foods are getting limited it seems due to increase of burn and activation of gland. Has anyone experienced a seratoma?
    By grateful where I am today and I have a very positive outlook. My tummy wants some real stuff so I am struggling a bit with the moment and trying to be creative as much as possible.
    Thanks so very much for any advise and so happy to find the blog. It good to hear from others experiencing the same. I had never heard of this before last summer. Definitely a learning process and a lot of patience involved.
    Again, thanks for any advice about the radiation and seratoma moving forward.
    Christie

  363. Charles
    July 17, 2013

    Great site, I really appreciate the cross-section of experiences from good to not so good. Some info in other places is all slanted towards horror stories or perfect outcomes. I am having a Warthin’s Tunor removed next week in Kansas City Missouri.

  364. toko murah
    July 25, 2013

    I just could not go away your website prior to suggesting that I really enjoyed the standard info a person supply in your guests? Is going to be back frequently in order to check up on new posts

  365. Eva
    August 4, 2013

    4 days post parotidectomy for pleomorphic adenoma per biopsy which, unlike the majority here, was excrutiatingly painful…surgery took 3.5hours and was told the tumor was deeper than they thought…not sure what that means…postsurgery experienced some serious pain and swelling for the first 3 days …swelling has started to subside in the last 24hours…neck is stiff..ear and cheek and part ofmyneck are numb and tingly…my mouth is a bit crooked when I grimace and can’t open wide enough to eat a normal portion…returning to have stitches removed on Wednesday…was told final path report for excised tumor would only be available in 2 to 3 weeks…won’t be thinking about it until I have to…God willing it’ll still be benign…the worsed for me was the terror of having surgery and the scars…my incision is still covered up so I haven’t seen the damage yet… hoping for the best

  366. Eva
    August 5, 2013

    Has anyone experienced bloosy spit?

  367. Vicky
    August 13, 2013

    I had my P-dectomy about 10 days ago. I’ve been struggling with eating – just within the last 2-3 days I can open my mouth wide-enough to get soft foods in, and have started to chew more normally. My surgery was to remove a marble-sized tumor from behind my ear. My incision wraps around my ear front-to-back, but not down my neck. My surgeon said he has improved on the incision – and this eliminates much of the scar down the neck. I’m super happy with that. My biggest challenge is the swelling – which seems to come and go depending on if/when I eat. Yesterday (which seems to be rather soon after surgery, according to most of the posts I read) I started to leak from behind my ear – the saliva runs down my neck – and literally drips on my clothes if I don’t hold a napkin to my neck. Super gross. Most other people talk about a lag-time before this starts, so I think I’ll call my Dr tomorrow for a consult. Thoughts from others?

  368. Jamieson
    August 15, 2013

    I’ve been reading this page for a while, as I’ve found it somewhat reassuring since I am is the same situation.
    -my lump was discovered about 4 years ago.
    -about a year ago the needle test revealed a pleomorphic adenoma
    -the ent doesn’t think it’s cancerous, but of course can’t guarantee that until it’s removed
    -he didn’t see the need for urgency, so we scheduled the surgery for after my work season, which was about 8 months away

    … Unfortunately I started to panic recently over that slim chance that it could be malignant, and have been having panic attacks. I decided to bump up the surgery to 6 weeks from now. I just need to know that it’s benign, and can’t mentally handle the wait any longer. I think this is partially due to the fact that some new discomfort is developing around the pa, and it’s on my radar now….
    Only 6 weeks to know…

  369. Michelle
    September 24, 2013

    This blog has been a blessing to me. I have had a lump under my ear on the left side for close to 10 years. I have been to the doctor two or three times (similar to the blog) and was told it was either a cyst or lymph. About a three months ago I started having pains and pressure on that side of my face. However, I was afraid to go back to the doctor because I was tired of being told it was nothing. So, I of course got online and started searching. I found this blog. It was uncanny how similar this story was/is to what I have experienced. The following Monday I called an ENT in my area (Colorado) and was seen that same day. They suspected it was a pleomorphic adenoma. They completed an FNA in the office and scheduled a CT scan. A week later I received the results of the FNA and found out it was a pleomorphic adenoma. I completed the CT scan and that confirmed my FNA results. I met with a new ENT (the one I originally met with did not have a second surgeon to complete the surgery so he recommended a new doctor). I am now scheduled for a superficial parotidectomy on October 16th. I have to admit I’m very scared to have this procedure done. I am relatively healthy and really havent had to go through something like this before. This blog is something that has got me to this point and I’m grateful that so many people have taken the time to share their experiences. It makes this process much more bearable! Thank you again!

    • Krissy from FL
      October 30, 2013

      Hi Michelle
      Hope you are recovering well. Please let us know.
      I am having this surgery done on Nov 13. Thanks.

  370. christy
    October 8, 2013

    Hi, my son has had two pleomorphic adenoma’s. One at the age of 9 and the other at the age of 11 that was removed in June. In the last month he has been having severe pain in the incision site. First surgery the scar did not heal and this surgery they cut around that scar to remove it. While the doctor was great he did not really believe that my son was having so much pain. After going between Tylenol, advil, and hydrocodone left over from the surgery they decided to give him steroid shots in the incision which helped for 11 days now the pain is back. Anyone had any experience with this or have any suggestions? This pain seems worst than the recovery from the surgery itself.

  371. janice
    October 9, 2013

    Its so good to know im not the only one had this pleomorphic adenoma although now quite scary to think so many of us have had it! My surgeon couldnt tell me how or why this has occurred. I just wanted to say I happened across mine by accident, I felt a small lump under my ear lobe pea size and wasnt worried but over the next 5 days it grew into the size of a “brazil nut ” This scared me so I had it checked out. That was July this yr and my op was September. The day after the op I had my drain taken out a lump come up under the site over my jaw line and I had to have a fine needle aspiration done which they took a lot of fluid out, this was saliva. Although my scar was very neat an small (just around my ear) and has healed ok Im still having problems with the lump, it does go down when I have it aspirated which has been 4 times now, but it comes back as soon as I eat. My surgeon said I have to massage it which Ive started doing now and found that this moves the saliva into my mouth, I can either spit it out or swallow it! Not ggod! And still, as soon as I eat it comes back, big and hard as before :( the lump is red and bruised but thats normal! I now use a blender for my food which helps as Im not chewing! I dont know how long this is likely to go on for – anyone? Im going back to work next week and my hair doesnt cover it – oops! I know thats the least of my worries, the tumor is out and it was benign so Im so thankful for that! It’l be 4 weeks on friday, apparrantly it can take up to 9 months to be properly back to normal so Im looking forward to that :) I came on this site before I had my op and it did help to know what to expect, I just hope find this as helpful as I did :)

  372. Steph
    October 26, 2013

    Everyone’s story is very interesting to me and I have read all comments more than once! Thank you to everyone who has shared. I do not feel alone! I am going in for the same surgery on Tuesday. My Pleomorphic Adenoma (PA) situation is the same as everyone else’s story. I first felt my PA a year and a half ago. It was the size of a small pea (now it is the size of a marble about 1.5 cm, but more oval than round). I asked quite a few doctors what they thought it was because it came out of nowhere and didn’t go away. All responded it seemed like nothing to worry about and that I should just watch it. Well I did that and about 3-4 months ago it started getting a little bigger, firmer, and became annoying (aching). I went back to my primary care physician and she gave me a referral for an ENT. In the meantime, I went to my dentist and, as he was checking for lumps, I had him feel my PA (which is directly below the front of my ear). He said it felt too high for a lymph node (everyone else said it was an enlarged lymph node). So, I saw the ENT I was referred to and he didn’t say what it was, but said I needed a fine needle aspiration (FNA) biopsy and “it” should be removed within 6-12 months. He also referred me to another ENT who does surgery. I went to the second ENT and within 2 minutes he knew exactly what it was. So, I had the FNA biopsy and it was positive for PA. I went back to my ENT and got all my questions answered before I scheduled my surgery. He said he had done 200-300 of these surgeries (over 500 surgeries “similar” to this surgery), So, I find him highly qualified (especially since only 1-2 people out of every 100,000 people get these!). And out of all of his surgeries he said he only had one patient with facial nerve damage because that patient’s tumor was malignant and the cancer was wrapped around the facial nerve. He said that in order to preserve the facial nerve he always does the surgery in tandem with another ENT doctor (who monitors the facial nerve while he removes the PA and parotid gland). He discussed the scarring with me and said he uses a “face lift technique” that goes all along the ear and a little bit inside the ear. He said the surgery will take about 2-3 hours, requires a night in the hospital, and a drain tube for a few days. Following the surgery I can expect a scar from the top of my ear to about an inch below my ear (on my neck), a permanently numb earlobe, and sweating along that ear when I eat. My biggest fears are: facial nerve damage and recurrence. Even though I am not looking forward to the surgery, I am hopeful all will go well and this will be the end of the PA chapter in my life!

  373. Steph
    October 26, 2013

    Last thought; I can’t help but wonder why certain people get Pleomorphic Adenomas (PA). There are two pieces of information, I have found on the Internet, that make sense for me. The first is cell phone usage. My PA is below my left ear and that is the ear I have always used with my cell phone. I even remember the old cell phones getting really hot against my face (early 1990s) before there were hands free and Bluetooth options. The second is having a lot of x-rays 15-20 years ago. I had a lot of x-rays one year (1998) due to an injury. Anyone else have a similar experience in either area? Just very curious since docs do not know why PA occur with some people and not others.

    • Krissy from FL
      October 30, 2013

      Steph-
      I hope you are recovering well and that you keep us posted on how your recovery is going.
      My story is exactly like yours only I have had my PA very slowly growing for a number of years. I was told the same thing as you by my general doctor that this lump by my right ear lobe was prob just a swollen lymph node since it was never giving me any pain. After years of being tired of worrying about what this thing was, I finally went to an ENT (Dr. Baggett is awesome) who suspected right away that it was a PA. She had CT and FNA done and I am so grateful that its a “benign” PA.
      My surgery is now scheduled for Nov.13. I am driving 3 hours to Tampa for Dr. Padhya to do the surgery as Dr. Baggett believes he is the best surgeon in dealing with facial nerves. Has anyone heard of or seen him before? I had my consult with him yesterday and really liked him. He explained to me exactly everything your surgeon explained to you Steph about what to expect with surgery and recovery. Of course I am nervous about the pain and recovery afterward, especially the nerve damage, but I am so glad to have found this site and see what to expect. Also, I totally agree with you Steph that I suspect cell phones are the reason why I have this PA! I was just telling my husband about how I remember my first cell phone always getting really hot and remembering having a tingling feeling near my earlobe once in a while. I am now only going to use speakerphone or an earpiece to talk on my cell and I am having my teenagers do the same. I’m sending prayers and hugs to all who are having this procedure done and those who are in the recovery process. I will do my best to keep you all informed on my surgery/recovery.

  374. Steph
    November 1, 2013

    Hi Krissy, I hope all goes well for you. It sounds like you found a great doc. That may actually be the hardest part! This whole ordeal is a very scary process. Stay positive/optimistic as that is an important factor in your outcome! Keep me posted on how everything goes. Below I will post my post surgery story. Sending blessings your way for a positive outcome. :)

  375. Steph
    November 1, 2013

    I wanted to report back on my recent surgery. Sorry this is so long, but I am hoping it will be helpful to those anticipating this procedure. First of all, I am shocked by my excellent outcome! My Pleomorphic Adenomia (PA) was removed 3 days ago and was around 1.5 cm. I also had my parotid gland removed followed by muscle reconstruction (the muscle below the parotid gland was stretched over the hole where parotid gland was, which will form scar tissue to keep my face from having a dip in that area). It ended up taking 2 hours (not 3) and I was able to go home after the surgery (and not stay a night in the hospital). When my IV went in on the first try I knew God was smiling down on me! Everything went perfectly! My recovery has been great so far. I have been shocked at how little pain I have experienced. On the day of the surgery it was less than a 3 or 4 (on a 0-10 scale with 10 being a lot of pain), the second day it was about a 2 or less, but today (the third day) I got the worst headache! I quit taking my Vicodin and am instead taking Tylenol with Codeine and that is helping. The surgery site is not causing any pain, but is itchy. Following my surgery, I could open my mouth all of the way. The first meal I had was flavored yogurt. It caused a pain at first, so I put it away for about an hour, heated it to room temperature and it was much better. I also ate chicken and rice soup with no problems. By the third day there was no pain with eating. I had quite a few visitors and I was totally comfortable talking and laughing the day I had my surgery. Here’s how the procedure went for me: I signed in at the hospital at 6:00am, was taken into the prep area at 6:10 where they did the following: weight, height, paperwork all verified, taken to a room with pull curtain around it, was given a gown with booties and took off all clothes, then the IV was put in. At about 6:40 I was allowed to have 1 visitor come in at a time. At about 7:10 the anesthesiologist came in followed by my ENT doc. Final questions were answered, then I was wheeled to the operating room. There were two nurses, two ENT doctors (one to do the surgery and one to monitor the facial nerves), and one anesthesiologist. When I woke up I was not in pain or sick (I didn’t eat past 7:00pm the night before per recommendations of others on this blog). Thinking that sure helped. In the recovery room a nurse helped me wake up totally. When she put the bed in a sitting position for me there was a lot of bleeding so she got my ENT doctor. He came in and cleaned me up and changed my sterile dressings. It was not currently bleeding, but rather just pooled blood from the surgery that came out when I sat up. My ENT doc actually gave me his personal cell number and told me to call him if it is after office hours and I have a lot of blood (gauze is soaked). I did not need to call him. Right after that, the nurse helped me put on my clothes on and then someone else wheeled me out to the car waiting to take me home. At home I had to have someone here for 24 hours (discharge orders). The good news continues! I have no facial nerve damage and my face functions just the same as it did before the surgery. I was so worried about that part and now I am so relieved! My ear was totally numb following the surgery, but now I can feel all of it except that little nub in front of the ear hole. I have a lot of numbness on my face near the stitches, but it seems to be coming back to life a little bit at a time. My drain bag was taken out the day after the surgery (yesterday) and it was totally painless. I get the stitches out next week. The pathology report will be in tomorrow or on Monday. That will hopefully confirm that it was benign and that all the margins are clear. Lastly, I was very picky about my ENT doc and wanted an ENT doc only and not an ENT/plastic surgeon. My rationale was that an ENT does a lot more of these than an ENT/plastic surgeon (plastic surgeon does a lot of cosmetic procedures all over the body and ENT only focuses on procedures on the neck and above). My main objectives were to get the PA out with the least chance of recurrence and to preserve my facial nerve completely. I was not worried about the scar even though my ENT doc did a facelift cut (inside the ear then down neck). I can always have the scar redone if I am not happy with it. The rest I don’t ever want to go through again! Now that I have been through this I can say the most difficult part is all the obsessing and worrying about the “what ifs” that goes on before the surgery. As I continue to recover, I wish all of you the very best!

    • Krissy from FL
      November 5, 2013

      Hi Steph!
      Great to hear your surgery and recovery are going great! It puts my thoughts a lil bit at ease about my upcoming surgery, although my PA is a bit bigger than yours was. I am definitely glad that it seems I have found a good, experienced ENT (not plastic) surgeon thanks to my regular ENT who said she could do the surgery but wanted to send me to someone she trusts specializing in facial nerves. Like alot of people who come across this blog, I am so grateful to have found it. Though my mind is never completely at ease, hearing everyone’s positive outcomes and how they look back and can’t understand why they were so worried in the first place keeps me positive. I think I’m getting to the point now where I am just ready to get this done and over with so I can stop worrying! :-)
      Thanks for the update Steph and I hope your recovery continues to be awesome! You will all be hearing from me in about one week talking about my surgery and recovery. ;-) Til then, take care everyone!

  376. Shauna
    November 13, 2013

    I was 20 when I was diagnosed with a Pleomorphic Adenoma of the Parotid gland three years ago.

    I found it one night in March of 2010 because my lymph nodes had been swollen for an apparently unrelated reason for several months and I was worried I had Lymphoma which lead me to constantly feel my swollen lymph nodes in my neck out of concern.

    It was a sheer moment of terror when I discovered the mass – As I knew it was a tumor immediately without question based on how it felt (hard and immobile, oddly shaped) I then felt self confirmation that I did have Lymphoma (which is what I feared for months) and prepared for the worst. I asked my doctor to be referred to an ENT for a biopsy which took several months and fortunately for me the FNA revealed that the tumor was benign. I was referred to a surgeon and was supposed to have the surgery within months after the diagnosis but I chickened out due to my emotional issues and fear of general anastesia.

    Now three years later, the tumor is still there due to my own stupidity, bigger than ever and hard as a b*tch. Some times it throbs and seems to enlarge around my period which no one can explain? but for the most part it doesn’t really hurt or cause any problems. I am planning to get it removed this year for sure as it’s just too f*cking big now (close to 3 cm) and I realize now that despite my paralyzing fear of surgery I need to get this thing removed as I feel it’s like a ticking time bomb for malignancy.

    I hope the surgery goes well for me and I don’t have too many complications.

  377. Shauna
    November 13, 2013

    … I see some talk of people correlating cell phone use with these tumors in this comment section? I am doubtful of that.

    These tumors are not common, in fact they are quite rare and why out of the millions of people that use cell phones on a daily basis would you be the one to get a tumor from that? why not everyone else. If it was cell phone use these tumors would be arising as an epidemic in everyone’s Parotid gland.

    I didn’t even OWN a cell phone at the time of diagnosis.

  378. Andy
    December 14, 2013

    I had the same surgery about 6 weeks ago. Up to 1 month, the area where it was removed would fill with saliva and puff up when I ate because the inner part of the gland was still intact. This stopped after the incision healed. In the 4th week, each day I would wake up with less of a bulge in the area. One thing I noticed is that there is a motor nerve down my face from the left eye, left nostril and left part of my upper lip which is very weak. I see the doc next week, so I will ask about that. Numbness is there but it seems to be yielding to sensation as time goes on. A touch of my earlobe doesn’t feel like a touch. It feels like pain, but I am sure that will change in time. I do not have Frey’s as you describe because my doc places a layer of fat over the nerve to stop it from attaching to the inner part of the face. I would say that the only bad part is the motor weakness. I can now grin, but I can’t smile. The left corner of my mouth won’t lift. Also, my right eye blinks normally, but when I blink my left eye, it blinks both eyes. A little strange. All of it is better than cancer and I am glad it’s out of my body. I hope that is it and no others for me (and all of you) in the future.

  379. Andy
    December 14, 2013

    A postscript to my previous comment… I see a note about a potential cause being cell phones. I don’t know about that, but I do use the cell phone on the same ear (coincidence?). I was told that it is quite possible that mine came from dental x-rays from the older machine (conical end) which uses film and not the newer type that uses much less power, less duration and has a highly-sensitive pickup tied to a PC. I did have a lot of dental work done in that area and I did have many x-rays there over the course of a year with the older style machine. So, if your dentist uses the older style machine, I’d say better safe than sorry, so avoid dental x-rays from the older tech and go with the newer tech. You will also find it interesting to know that my GP though the adenoma was TMJ swelling. It was my (new) dentist who disagreed and told me to get to an ENT specialist immediately. Don’t delay if you have one of these because they grow and removal becomes more complex.

  380. Bob
    December 31, 2013

    This is a follow up to my comments of July 16, 2012.

    Now about 20 months out from surgery. The numbness is pretty much gone. There are some areas that feel “different” but I seem to have full sensation there; it just feels odd when I touch the area just forward from the inferior end of the scar (on the neck). Not a problem. Wish I could explain it better.

    The swelling in the inferior part of the scar is not visible to others, but I can feel it just under the skin. Not a problem.

    I referred to some adhesions in my earlier email. I loosened them just by rubbing the skin and moving it around. Now I have no adhesions, and the skin forward of my ear (and over the parotid) is as loose as the other side. Not a problem.

    In summary, a good outcome with no recurrence (yet – knock on wood).

    Again, a great web site, and a wonderful resource for those heading into this procedure.

  381. Andy
    February 15, 2014

    Just an update… 3 months out from surgery and the motor control for my eye, nostril and mouth are back to 95%. Minor numbness near my ear canal, but sensation is returning and getting better every day. My face looks normal and I have been putting vitamin E on the scar each day. Most of it is under my earlobe, so it is hidden. All in all, I am quite fortunate to have had such an excellent surgeon. He assured me that everything would return and he was right. Now I have to deal with the fear of reoccurrance. I find myself rubbing my face from time to time, feeling for anything new. As with all things of this type, early detection is important. I hope that if you are reading this, you are as fortunate as me.

  382. Amanda
    March 4, 2014

    I’ve been diagnosed with a non malignant PA but with no offer of surgical removal. I’ve been advised to keep checking it for increase in size. After reading these posts I wondered if there are any others who have been given this advice as I see most people here have had or are going to have surgery? I’m in the UK. This is a very informative website, thanks.

    • shannon
      March 17, 2014

      Hi Amanda,
      A parotid tumor benign will continue to grow, the larger it gets the more complication you may have with the facial nerve. I had my surgery las t week with great results! You should get a second opinion from another ENT doctor. My advise is get it removed now while the tumor is small.

  383. Rosalind
    April 21, 2014

    Hello, I was diagnosed with what they think is a pleomorphic adenoma. I had a FNA last week and will get the results later this week. I have been reading this site and have found it very comforting. Thank you all for sharing. I am going to have the surgery even if it is benign and I am wondering if there are other older patients who have had the surgery? Everyone seems younger and I am 72 but in very good shape. I am worried about the facial nerve regeneration in older patients.

  384. Rosalind
    May 4, 2014

    Update,the FNA came back inconclusive. I had a Core Biospsy last week and they are now trying to rule out lymphoma. Has anyone else had this diagnosis?

    • Rosalind
      May 16, 2014

      Turns out Lymphoma was confirmed. Starting chemotherapy and will have radiation too as this is an aggressive form of lymphoma. Good Luck to all.

      • Leslie
        July 24, 2014

        Hi Rosalind – How are you doing with your lymphoma treatment? I’m new to this website and saw your post. Wishing you well!

  385. David
    May 13, 2014

    I’ve done my surgery on 7 May 2014. I really appreciate this post and I would like to contribute my experience too. I am one of the lucky one I think. I’ve taken no pain killer at all so far, my face is partially numb around the wound since the surgery but I can feel that they are coming back day by day.
    I’ve spent 3 days in the hospital, waiting for the silva be total drained. I had a bottle attached to my neck, collecting 50ml of liquid on the first day after the surgery and 30 and 10ml the following days. I then was discharged to home. One day after home, the dressing was wet, I then change the dressing myself the next day, the wound then finally dry up afterward. on the 5th day after the surgery, I can drive, and today, the 7th day after, I can turn my head freely without pain. The face also get back to normal shade on the 7th day. my jaw is a bit weak before, today i can eat peanuts and chess nuts. still feel uncomfortable when opening my mouth, but i think it will get better tomorrow. Thanks all.

  386. gly
    June 27, 2014

    hi, thank you for sharing your experience with us. i have the same condition and i’m quite nervous not because of the operation but of the scar. i’m a keloid former and i don’t know how to deal with it. i’ve read about the “contractubex” stuff and i’m praying it would work for me. i just want to ask about the how’s of proper wound care. thank you

  387. Nina
    July 4, 2014

    Hi everyone, this blog is so helpful. I’m 45 years old and discovered a lump in my cheek 13 years ago. I was misdiagnosed to have a lipoma for all these years. Recently I was sent to US and then to CT and it is definitely not lipoma and pleomorphic adenoma arising in the accessory parotid gland is suspected. My ETN suggested op. He still isn’t sure wheather it will be possible to remove it trans orally. For all this years the tumor has stayed stable in size 1.5 mm according to CT. I know that in longstanding rumors the risk of malignant degeneration grows to 10% but still there are 90% that it won’t transform to melignant tumor. I’m so afraid of this op. And all the consequences : permanent nerve dsmage, Frey syndrome high risk of recurrence in case of not removing it completely. I tend to leave it as it is and observe it every 6 months. My other ENT also agreed with me and told me to leave it for a while as it doesn’t grow and doesn’t bother me. I am in front if a big dilemma. I don’t know what to do. Did anybody have this tumor in an accessory parotid gland? Thanks

  388. mary jones
    July 5, 2014

    had a superficial parotidectomy for a benign tumour on 22 may 2014.still cant move left eye brow and have left sided weakness in the left side of my mouth also pain in my ear drumb is this temporary or permenent.im 64.have to wait another week to see my consultant.my opp lasted 4 hours.

  389. Bess
    July 10, 2014

    Thanks so much for sharing your experience. I’m having my op on 17th July 14 and the doctors really haven’t told me anything so its good to hear others experiences. I have a similar story, had a lump for years and am only finally getting something done about it now. I’m a bit nervous about it especially with all the facial nerves in that area but fingers crossed everything goes well. I’ll let you know how I go :)

  390. joffie
    July 11, 2014

    Thanks to all your posting. I had my parotidectomy 3 weeks ago. Though i have the same facial nerve paralysis my doctor said that it is just temporary and will heal in 3-4 months. I was advised of facial exercise and Vit. B.

    The only difference of my parotid tumor is not pleumorphic adenoma. It is warthin tumor and also a benign one. When I read some reviews of warthin tumor is due to smoking which occurs more in man than woman. But I am 60 years old and I have been smoking when i was 18 years old.

  391. shiplu ahmed
    July 15, 2014

    hi,i am 30 years old male.like most of the story i too began feel a lump in my right parotid just front of my ear.its was too small to notice.no pain,no irritating feelings at all.i became serious about it 4 years ago and tried Homeopathy as many lumps can be treated with it.anyway,after 4 years of trying i finally surrender to an ENT.as usual i was referred to FNAC which confirmed it a pleomorphic adenoma.OMG,i am having a tumor for about 10 years or more.the ENT advised a superficial parotidectomy but i am very afraid of facial nerve damage.its almost 7 month my FNAC done.still no surgery.planing to undergo surgery next december.all you guys story has made me to go ahead to surgery.thank you all.

  392. Sara
    September 3, 2014

    This was a very helpful blog for me—thank you to all who contributed. I’ve had ultrasound and MRI. My doctor thinks it could be pleomorphic adenoma, however we will have more info after I get biopsy. I’m terrified it could be cancerous, so hopefully they will get me in for that sooner than later. He said the ultrasound looked more like a cyst, but the MRI looked more like a mass. It could be a lymph node too—funny I thought an MRI would give a lot more info. It’s gotten so much bigger in the past week–maybe from touching it? When I noticed it a week ago it was half the size. I’ve saved this website though as a favorite in case I need surgery—and it is reassuring to see that it doesn’t always turn out horrible. I just looked this up on a different site where everyone seemed to have cancer, so think I’ll stick to this site until after I get results of my biopsy back.
    Thank you all :)

  393. Karen
    September 7, 2014

    Hi all
    I had my partoidectomy May 21st this year. Although I initially found the day’s after the op painful, tiring and suffered an ear infection, after few weeks improved alot.
    It was a benign tumour thankfully and my op lasted 3.5 hours.
    Now though I am experiencing a lot of earache just as when I had the tumour, shooting pain in my ear, watery left eye and itching on my neck where my skin is still numb. I realise the nerves are all joining up internally but wanted to know if anyone else has/is experiencing this after their surgery? Thanks

  394. RJ
    September 18, 2014

    Hi All,

    This is a real good Blog and great discussion. Aug 19, I was scratching my ear when i noticed a very small, hard and semi mobile lymph just below my left ear and just above the jaw like. It came out of nowhere and same day I went to ENT, got a prescription of antibodies for 5 days and then revisit. Antibodies did not make a difference in and i went to the ENT again on 25th. Then Doc ordered FNAC, I am usually a positive person but became so negative in just one day Coz I was a smoker (Last smoke on the morning of Aug 19).
    Thankfully it was Plemorphic Adenoma size was sub one CM from CT Scan. Doc suggested me to wait and come back after another Six month. I went to a famous doctor on Wednesday 27th Aug, the with the report and he recommended partoidectomy. Admitted and got operated on 29th.
    It is been almost 3 weeks and the recovery was pretty fast. I still have numbness, swelling of neck, dis-synchronization between two eyes, partail paralysis on lower lips but that seems improving by the time.

    Wishing a faster recovery for everyone.

  395. Sue
    September 19, 2014

    I had revision surgery on 15 September 14, 28 years since my first surgery. I also had muscle moved to prevent a dip where the tumour was removed and also in my face to try and stop the Frey’s I have been suffering. My tumour was the size of a golf ball and it was almost a given that I would have permanent facial palsy. By some miracle my surgeon, Mr Costa Repanos, removed the tumour with no residual effects.

    I have been told there is a high risk of further tumours, but I will deal with these if they occur.

    It is far more painful than my first surgery, I am totally deaf in my left ear with severe earache. But I am optimistic that with rest and recovery this will disappear.

    This blog is amazing and it is staggering the number of fellow sufferers.

    I wish you all well and full recoveries.


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