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

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.

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.

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.

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.

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

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.

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

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!

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,

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.

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

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.

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

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.

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

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?

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?

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.

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!

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

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.

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

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?

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!

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 ..

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.

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.

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 …

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!!

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.

ps. My surgeon is from Modesto, Ca

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

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.

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.

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.

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!

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/

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.

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!!

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!!!!!!

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.

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

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

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

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.

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

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

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.

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.

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.

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…..

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

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?

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….

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…

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.

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

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

Nat con’t,

It has been 8 days for me.

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

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

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.

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….

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.

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:)

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.

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

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

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

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

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

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….

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

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.

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

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?

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.

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

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

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

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

ps,

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

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

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

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

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.

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.

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.

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

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.

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.

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

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!

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.

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

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.

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.

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?

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.

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

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.

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.

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.

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

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

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

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

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.

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

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

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…..

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.

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.

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

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