by Neil Bauman, Ph.D.
A man asked:
A while ago a CT scan revealed I had a cholesteatoma in my left ear. I had the chance to be treated by two ENTs, but they had different takes on it. The first doctor, after seeing the scan results, immediately concluded that I needed surgery to remove it. The second doctor took me to the hospital where he worked (after seeing the scan) and took some samples (i.e., removed the part that’s anterior of the ear drum and took it for further testing.
After the results of the biopsy came in, this doctor told me that it’s not a tumor, and there was no need for surgery at this time—that I just needed to go back every 3 months for follow-up. He cleaned up the anterior part of the cholesteatoma though.
After evaluating the output from the two doctors, I decided that surgery was not necessary, so I cancelled the surgery the first doctor had scheduled. I mean, why should I suffer more hearing loss (because the first doctor told me my ear drum would be taken out during the operation) when the operation was not even necessary? At least, that is what I thought at the time.
Soon after, I went to Taiwan for a vacation (where I came from originally). Because I still had some concern about my ear, I went to a hospital and saw a famous Taiwanese otologist. I had only brought the documented report, not the scanned photos with me. Based on my description and the document (from the doctor who said no surgery was needed), the otologist said I needed the surgery because I had a cholesteatoma. He said if I don’t do anything it may eat up the nearby nerves and even damage my brain.
By the time I had the CT scan, the cholesteatoma had already eaten part of my ear bone. That was why I felt pain and had some hearing problems and had gone to the doctor in the first place.
Right now I am confused as to who I should listen to. As it stands now, its two doctors for the surgery and one against it. However, the one that said no to surgery did the most detailed examination. What’s your view on my situation? Any suggestions based on what I’ve described here? It sounds serious to me.
Cholesteatomas [koe-less-tee-ah-TOE-mahs] are a mouthful to pronounce for sure. They are not tumors. Rather, cholesteatomas are cysts that typically form in the middle ear and keep on growing. Although they are not cancerous, the fact they keep on growing makes them bad.
I like to think of cholesteatomas as an “acid” that slowly “eats” (destroys) everything they come in contact with until the day you die, or they are taken out.
Thus, I think the real question is not whether you need the surgery or not, but when—now or later.
As I see it, two doctors essentially said, “It’s a cholesteatoma and needs to come out now [before it grows any bigger and does more damage, and while it is still small enough that I can get it all before it gets into your nerves and brain]”, while the other doctor said, “Let’s wait awhile and see whether it will grow bigger [and if it gets bigger I’ll take it out].
Personally, I’d side with the 2 doctors and have the operation now. Remember, one is an otologist and that counts for a lot in my opinion.
The reason I say go for the surgery now is because cholesteatomas grow and cause more and more damage as they get larger. This means if you wait, you’ll need more extensive surgery than if you have the surgery now.
This more extensive surgery may affect other things such as your facial nerve. For example, the lady who sat behind me in church had a cholesteatoma taken out. Unfortunately, the doctors had to cut her facial nerve in the process, so one side of her face was paralyzed. Hopefully, by doing it sooner, you can avoid that.
As I see it, the basic down side to having the surgery now is that you will lose much or all of your hearing on that side. So if you wait, you may have some more months (years?) of hearing on that side before you really need the surgery.
In spite of that, as a hard of hearing person, if I had a cholesteatoma, I think I’d have the surgery immediately to minimize the ultimate damage to my ear. I’d sacrifice some hearing now in order to get all the cholesteatoma before it spreads and causes further damage.
Incidentally, even if you lose all hearing on that side (because the middle ear is taken out) there are two special hearing aids that can bypass your middle ear and still let you hear because your inner ear on that side would still be good. One is the TransEar (a bone conduction hearing aid that looks like a small in-the-ear hearing aid, and the other is the BAHA (bone-anchored hearing aid).
Even if your inner ear was affected, these above two aids could pipe the sound to your good ear so you’d still be able to hear from your deaf side. Thus you have some options open to you no matter what happens.
I have gone through cholesteatoma surgery 2 years ago through Canal Wall Down procedure. Two hearing bones were effected by cholesteatoma that were removed in this surgery.
I want to recover my hearing loss so that i can listen in natural way. Don’t wanna use any hearing aid. Some doctor gave opinion that bones can be transplanted. Is their any possibility to recover through this loss? … or can tympanoplasty type procedures helps to recover it?
My bone was reconstructed with cartalige
As was mine in 1995. Although I let my issue go for 7 years lost 2.5 of the bones in my ear from erosion from the cyst (mind you there are only 3 bones in the ear) my 2 hour surgery turned into 6 hour surgery because I had let the earaches headaches and bleeding from the ear go on for too long. Most people who have this issue in the one ear will most likely have it in the other eventually, this is what my last surgeon told me and now it is 2017 and I am noticing the same symptoms in my left ear, meaning the slight vertigo, pressure and headache but this time without all of the infections and drainage however, I am sure if I ignore it like the last time those infections will soon come. I will not go through that again! When I had my surgery in 95 I had so much damage that my doctor said I had a 50/50 chance of being paralyzed on the right side of my face and the percentage he was giving me was generous at best as the cyst was resting on the facial nerve and was very close to rupturing. I was blessed to have a very skilled surgeon that was able to remove the cyst rebuild the remaining bone I had left and then rebuild the extremely damaged eardrum and attach it to the remaining rebuilt bone so I could have some sort of chance at hearing out of that ear. And I can hear out of it although I lost about 60% of me hearing I am happy with that rather than the loss of facial control. Whoever may read this please do not mess around with your health when it comes to these Cholesteatomas. They are very dangerous and although they may not be cancerous I think they can be just as bad to your health. Good Luck to all
Good afternoon, Shannon! I’m trying to find a good surgeon. You had mentioned you had a very skilled surgeon. Could you please give me his name and where he practices. I would be so very grateful.
Thank you!
To Azhar – I had two of three bones affected. replacements were attempted but were rejected by my body. This was 20 years ago and I am sure they have better techniques today. I am now researching what to do as the hearing is pretty much gone now in that ear. Good luck!
You say ” Until the day you die” If you dont get it removed then you will die anyway?
Hi Craig:
If a cholesteatoma continues to grow and “eats” through your skull and into your brain, it can kill you. That is not to say that every person with an untreated cholesteatoma will die from it, but it does happen. Much better to get it removed while it is small–before it grows big and causes problems.
Regards
Neil
Dr. Neil, my 85 year old mother was diagnosed today with cholesteatoma in her left ear. My concern is her age. I understand that it will continue to grow but at what rate?
Hi Sylvia:
You need to discuss with her doctor how fast the cholesteatoma is growing. Some grow very slowly and may not be worth an operation at her age. But others grow pretty fast, and the sooner surgery is performed, the better.
Cordially,
Neil
In 2009 I had my 4th surgery to remove a cholesteatoma. This time around though I had ignored the symptoms for years and years. I already lost my eardrum and they had closed up my ear so migraines vertigo were part of my everyday life. It had grown so much it destroyed a piece of my jaw bone and burrowed a hole about the size of a quarter into my skull. Needless to say my dura was drooping through. I had to have my skull repaired. That made for an extra surgery that had to be done first and as soon as possible since the cholesteatoma had started to grow on that. now here I am 2015 and have an appt next week because I’m positive it’s back again. Only been ignoring symptoms for about 2 years now. Im scared to death to have another surgery because the last one I had my facial nerve nicked and got about 80% of my movement back. I don’t want that to ever happen again.
I just had a misdiagnosed cholesteatoma removed. All 3 of my ear bones were destroyed. I went a different DR with the same symptoms 1 year ago. How much does a cholesteatoma grow in 1 year? I am wondering if some of the ear bones could have been saved if the caught it 12 months ago.
Hi Amy:
As I understand it, cholesteatomas typically grow slowly. Thus, last year it would have been somewhat smaller to be sure, but I don’t know whether it would have been enough smaller so that your doctor could have saved all/any of your 3 tiny bones or not. Your first doctor obviously missed the boat on your diagnosis. As you know, sooner is better when you discover you have a cholesteatoma and need to get it removed. Unless you have copies of a CT scan or MRI from last year to compare it with this year, it is only speculation how much it might have grown in the intervening year.
Cordially,
Neil
Mine wiped out everything, all bones and leftnme.looking like I had a stroke and having seizures in less than 12 months.
I’ve suffered with cholesteatoma all my life and have had three surgeries, first of which was a mastoidectomy. Now I have having pain again and wonder if the cholesteatoma has spread outside the ear possibly in the jaw. My ENT said it was arthritis because I have a clean ear canal. My dentist said it was sore muscles and ordered a night guard. The pain has not been relieved. How can I tell which of the above is causing the pain?
Hi Carol:
Why are they not doing CT scans and MRIs to see whether the cholesteatoma has come back and has grown into your cochlea and is thus causing the pain. I would have thought that would be the first thing they’d do.
Exactly where is this pain? If it is in your muscles, you should be able to tell that. If it is in your neck, you should feel your neck tight. You might need to go to a chiropractor, preferably an upper cervical spine chiropractor.
Cordially,
Neil
Good afternoon,
I had a colestheatoma surgery at the left ear in România in 2013, following which my hearing has been seriously affected. Now I have been diagnosed with colesteathoma at the right ear and I am looking for a clinic in Europe where I could have the surgery done, with a more successful hearing sense afterwards.
Please let me know if in your network you have doctors specialized in colesteathoma and I could send the documents for an opinion or please redirect me to another clinic/hospital.
Thank you and regards,
Camelia Vlad
Hi Camelia:
Sorry, I can’t help you there. I’m not in any networks of doctors.
Cordially,
Neil
I was just diagnosed with a cholesteatoma. Will I still be able to scuba dive before and after surgery?
Hi Ann:
It is impossible to answer your question accurately without knowing much more about your situation–the size, placement, etc. of your cholesteatoma. The only person that can really answer your question is the doctor that is going to do the surgery. If it is small and if neither your ear drum nor your Eustachian tube are affected, then I think it probably wouldn’t affect your scuba diving. Your surgeon should be able to tell you once he does the surgery.
Cordially,
Neil
They say i have a cholesteatoma i am 65 years old have diabetes, RA and Cardio vascular disease with stents in place the surgery is scary at best and diabetic s don’t heal well
So I went to the doctor because I had an ear ache and my jaw hurt when I opened my mouth wide. The denstist told me my jaw hurting was because I had a wisdom tooth that came in sideways in the gum on that side of my face. But the ENT told me my ear drum looked bad and it stemmed from my ear. After getting some antibiotics my jaw dropped hurting in like 3 days along with my ear. I went back to ENT and he told me I had Cholesteatoma. I went and got a cat scan and came back and was told after looking at the Cat Scan I had congenital cholesteatoma. I was then told I needed to see a specialist so he can determine next steps which would most likely be surgery. However, I am in no pain and haven’t had any dizziness or stinky discharge or hearing loss or anything that accompanies this diagnosis. But the Cat Scan shows bone loss. However I am hesitant to go through with a surgery and make things worse because I’m afraid of what might happen when to be honest I’m not even sure if it’s that bad anyway. If it’s congenital which means I had it from birth shouldn’t I already be death in one ear if I’m now 37 years old? Why should I get a surgery at 37 to potentially lose my hearing just got the cholesteatoma to possible grow right back in two years and I need another surgery. Seems like to me my diagnosis was a reach for something that wasn’t neccessarily there and getting the surgery is a lose lose result anyway. Any thoughts? I have another meeting scheduled to speak with a specialist but considering canceling the entire thing and just trusting God because it seems like it’s a lot of guess work and if this and if that going on but the only thing that’s for certain is having this surgery will be life altering…
Hi Terry:
If you’ve had this cholesteatoma for 37 years now, it obviously is slow-growing, or not even growing at all. Therefore, unless it is giving your problems, most likely you can leave it alone.
So you have to decide whether your doctor is correct or not. Since the antibiotics took the pain away, perhaps the pain was from another cause, not the cholesteatoma.
Probably your best course of action is to see another specialist for a second opinion. That should help you decide what you want to do. I agree, you don’t want to act on guesswork.
Cordially,
Neil
Hi I have been told my ent that I have cholesteatoma in left year and need a surgery by viewing ct scan report and X-ray. How quickly should I go for surgery and I have low hearing on left side so would I be able to recover my gearing? Thx
Hi Inayat:
If your cholesteatoma is slow growing there is no panic, but you want to get it taken care of sooner rather than later. You should follow your doctor’s thinking on this.
I doubt you’ll recover any lost hearing after the surgery. In fact, you may lose some more hearing due to the surgery. It all depends on exactly where the cholesteatoma is, how large it is and what structures it has invaded. Again, your doctor is the person to talk to about this.
Cordially,
Neil
I had Cholesteatoma and u had to get sugery and I was 10yrs old it’s hut afterward but every 6 months I have to get a check up to make sure it doesn’t grow back
Hi Dr. Bauman: I’m a 27-year-old man. I was diagnosed with an attic cholesteatoma in the right ear in 2011, but my doctors there favoured a “wait and see” approach (nor did they take a CT scan, which seems inappropriate). I have a history of ear infections (in both ears), but no hearing loss, discharges, pain, no trouble flying, or other symptoms in the cholesteatoma ear.
I now live in the Netherlands and my doctor prefers to remove it. He says it’s not large, and quoted a short surgery (1-2 hours) with only a small incision behind the ear, and made it sound like within a week I’d be back to myself, even that I could fly after 2-3 weeks. At first I seemed very open to this.
Now, however, as I’ve read more on the surgery, I’m nervous of the side effects, particularly given that right now, I experience virtually no problems. Unfortunately, here in NL, getting a “second opinion” isn’t really how the health system works.
I don’t want to kick the can down the road if it shouldn’t be, but I also don’t want to incur any unnecessary risks. On the other hand, I fly often for work and am visiting family in South Africa at the end of November. I really don’t want to miss these things.
My surgery is scheduled for 12 October.
I know it’s difficult to say when you haven’t actually checked someone out, but should I try to dig deeper into this first or does the story seem to “check out”? I’m also concerned my doctors are being a bit too optimistic about my ability to get back to work and fly, but perhaps I’ve only read too much negative information.
Many thanks for your thoughts.
Hi Chris:
Remember, I’m not a medical doctor, so I’m just giving you education regarding this–not medical advice.
It appears that your cholesteatoma is slow growing. Thus there isn’t any panic to get it removed. Therefore, as a compromise, why not reschedule the surgery for the new year. That way it won’t interfere with your travel plans for now, but you’ll also have it taken care of in the near future.
Reading all the negative stuff on the internet can scare you, but it gives you an idea of the kinds of problems some people have. Many others don’t have those problems. I think that it is mostly the people that have problems that write about it–not those that have smooth sailing. So take that into consideration too.
Cordially,
Neil
Hi
My 16 y old son has his surgery on Jan 8 2019, but we are planning a trip with flying involved before that. He currently feels pressure in his ear. Can It be a problem to fly ?
Hi Serge:
That’s a hard one to answer since I don’t have enough information to tell you anything definitive. However, put it this way–if he can yawn or swallow and make his ears pop normally, then I don’t think flying (pressure changes) will be a problem.
However, if he cannot make his ears pop in response to pressure changes, then flying may cause a lot of pain, etc. and I wouldn’t risk it.
If the problem is only that he has sinus congestion, then taking a decongestant an hour before takeoff and another one an hour before landing is a good strategy.
However, if the cholesteatoma is interfering with regulating middle ear pressure, then personally, I wouldn’t fly until the problem is fixed.
Cordially,
Neil
Can a cholesteatoma grow in a year? I had an inner ear shunt placed 15 months ago for meniere’s, and now have my entire mastoid bone lighting up on my MRI and have conductive hearing loss. My neurosurgeon thinks its a cholesteatoma and I’m waiting on a 2nd opinion from an ENT that didn’t do my original surgery, and several middle ear steroid injections.
Hi April:
As I understand it, typically cholesteatomas grow slowly, but that doesn’t mean than some don’t grow much faster. You may have a faster growing cholesteatoma, and if you do, you want to get it taken out sooner before it causes more damage.
You are wise to get a second opinion, or even a third opinion if the first two are different from each other–then go with the majority decision.
Cordially,
Neil
Hi,
I have a history of ear infections. Few days back, When I woke up I felt dizzy and on moving my head(while lying down) I felt that ceiling is spinning. This sensation lasted for around 30 mins. My balance was ok for walking and standing(except some light headedness). I have no repeat of this situation but lightheadedness is there at times. I went to see a doctor and after viewing my left ear Doctor said that I have C-toma. I have decided to got for surgery. My CT scan is scheduled day after tomorrow.
Do you think my C-toma has grown alot as I had a small vertigo( sppining sensation) once?
Hi Ravi:
Unless your cholesteatoma has grown into your vestibular system, I don’t see that it is causing your balance problems. You can have spells of vertigo for entirely different reasons. You could have a viral attack on your vestibular (balance) system, for example. That may just give you an episode of vertigo and then go away.
See what your CT scan shows about your cholesteatoma.
Cordially,
Neil
Thanks Neil. If C-toma has grown into vestibular system can it be cured without damaging my balance part in the ear?
Hi Ravi:
As far as I know, a cholesteatoma has to be surgically removed. Therefore, if it has grown into the vestibular part of your inner ear, cutting it out would almost certainly damage the vestibular system in that ear. You should double check with your doctor.
Cordially,
Neil
Hi Dr Bauman,
I have been diagnosed cholesteatoma in 2012. I didn’t do surgery. Last year, there was a large piece of “wax” (size about 8mmx8mm) dropped out of my ear. Could that “wax” be cholesteatoma? Can cholesteatoma drop out of ear by itself? BTW, I lost my eardrum when I was a child. What is the typical size of adult’s tympanic cavity?
Thank you for your help!
Hi Claire:
I wouldn’t be at all surprised if the wax that fell out of your ear really was ear wax. A cholesteatoma is basically abnormal skin growth in your middle ear. I’ve never heard of one dying and falling out of your ear.
The size of your tympanic cavity varies from person to person, but it is roughly the size of a large pea.
Cordially,
Neil
My 11 year old daughter has been diagnosed with cholesteatoma after a bad ear infection not clearing up. A swab was taken and the result was an urgent ent appointment who then arrange ct and mri scans which have shown it is 1.5×1.5cms. Is this big? She had no previous ear infections.
Hi Jo:
I’d say that was a fairly big cholesteatoma–considering that is about a 5/8″ cube and your middle ear is only around the size of a large pea. If your doctor says take it out now, I’d go with that.
Cordially,
Neil
Thank you for your reply. I thought it was big. For her age and the size of the cholesteatoma. Would you hazard a guess that it’s congenital?
Hi Jo:
It could be. I’m no expert on cholesteatomas. Some grow slow and some are fairly fast. So if it was a slow-growing one, there’s a good chance it was congenital.
Cordially,
Neil
Hi my name is obet, im from the Philippines. I have tinnitus and cholesteatomand scheduled to be operated next week. Is there a possiblility that might cure my tinnitus after surgery? Please pray for me and wish me luck. Will uodate you soon.
Hi Obet:
I wouldn’t get your hopes up that your tinnitus will go away after your cholesteatoma surgery. If your tinnitus is caused by hearing loss due to your cholesteatoma, taking out the cholesteatoma is not going to necessarily restore your hearing because the structures that it’s invaded will be damaged or removed.
However, if your hearing improves after the removal of your cholesteatoma, then there is a good chance that your tinnitus might go away.
Cordially,
Neil
Thank you ver much for that last paragraph, it gave me high hopes. By the way, my operation was moved to june 28. Now I have to bear with my T for a couple of weeks more. Also, is having a foul smell after the op common even the ear is dry? I also read this in the other forum.
Hi Obet:
To me, a foul smell means that there is an infection/decay of some sort present. In other words, the doctors didn’t get all of the cholesteatoma. If everything was removed and only healthy flesh left, what would be the source of the foul smell?
Anyway, that’s how I see it.
Cordially,
Neil
Hi Neil. I had my op (mastoidectomy/tympanoplasty) done last june 30. And I pray and hope this will be a success procedure. Its been 3 days now and the pain is bearable and feeling some fullness. I can hear a pulsatile tinnitus and a high pitch static sound. I hope these will disappear soon. The packing is scheduled to be removed this friday. Hoping everything goes well.
hello tol… im also from Phils.. capiz to be exact.. kanina lng ako ng pacheck up ng tenga ko.. my nakuhang puti pero walang foul smell.. nerecommend na ipa biopsy para malaman kung cholesteatoma ito o hindi.. magkano po ang bayad sa operasyon?
Hello.
I was just diagnosed with a ctoma and scheduled for surgery 4 months from now.
I had my first ever ear infection about 6 months ago, and another one about 3 months ago that caused me to lose 60% of my eardrum and most of my hearing in my right ear.
Besides hearing loss I have no other symptoms.
I’m worried about the fast rate of growth of my ctoma, and if 4 months to wait for surgery is too long, considering that the ctoma itself only developed and destroyed my eardrum in less than 6 months. (I had no prior allergies, or infections. Not as a child or anything. I’m now 32)
I don’t think my doctor realized this was my first ear infection, so they may be assuming it’s a very slow growing ctoma.
If it’s fast growing, do you think it’s safe to wait for 4 months?
Thank you for your time!
Hi Sky:
I think you need to have a talk with you doctor and express your concerns about how fast you think your cholesteatoma is growing, and whether it is wise to wait another four months for the operation.
If you don’t find satisfaction with him, I think you should see another doctor for a second opinion. If they both agree that 4 months is ok, then fine. But if the sceond one says it needs to be sooner, then I’d follow his opinion since it would seem to agree with what you think.
Cordially,
Neil
Hi, I am 32 years old and a severe case of cholesteatoma was removed via modified radical mastoidectomy to my right ear only 12 mths ago. The recovery has been difficult with much pain to my RHS skull/ear area. I still have a lot of pain and it’s constant. No pain meds seem to help dull the pain. I still don’t feel like the same person I was before the surgery and have now gotten used to having a BAHA aid on the RHS. I also keep getting cysts in different places of my outer ears. Have not long been diagnosed with same condition in the left ear and am scheduled to have the same procedure in Jan 18. Which is very nerve racking for me given the difficult recovery I have endured from the other ear. Given I am not quite 100% should I be getting a 2nd opinion on my condition before having my ‘good’ ear operated on. Do you have any idea what the long term outlook will be or any advice on Managing the pain ?Thank you
Hi Kimberley:
I think it is wise to get a second opinion given the tough time you have had/are having with the previous operation. Maybe you need a different doctor that is more skilled in removing a cholesteatoma without causing all the residual pain (if that is possible).
I can’t really answer your other questions. I don’t know what your long-term results might be. Not my area of expertise. Ditto for long-term pain management. My only advice is to see a pain doctor and don’t get hooked on any narcotic drugs (or any other drugs for that matter).
Sorry I can’t help you more.
Cordially,
Neil
Neil,
If a Cholesteatoma is of any size and has done much destruction a Neurotologist is needed, not a Otologist. Cholesteatomas are non-cancerous tumors that destroy tissue and bone, if left untreated they can eventually cause an abscess in the brain and death. My son had a ENT who cleaned & watched a C-toma but, didn’t tell me until my son started falling at home & at school. Hee was 5, I took him to another ENT and he referred my son to a Neurotologist, and said,” this Cholesteatoma is beyond my scope.” It had destroyed both hearing bones and part of the mastoid. It also recurred 9 more times. Meaning 9 more surgeries. I’m a R.N but I was not at the time my son went through all of the problems with the C-tomas. DON”T WAIT! HAVE A NEUROTOLOGIST REMOVE THEM IMMEDIATELY!
In your experience, what is the average length of time for a patient to see signs of improvement in hearing after ear drum and middle ear reconstruction surgery? This was the second surgery after removing a cholesteatoma. Thank you for your input.
Hi Frank:
Sorry, I don’t have experience with this so can’t answer your question. Since I’m not a medical doctor, I don’t deal with this kind of thing.
Cordially,
Neil
Hi 4 years ago i got an ear infection as my ears were bleeding alot while i was pregnant with my son…,due to the pregnancy the doctor said she could not give me any medications…it stopped and a year later it came back…only recently i was diagnsed with having cholesteatoma in my left ear….not sure if i should do a surgery?
Hi Shanice:
I’d get the surgery. Cholesteatomas don’t go away–they just get bigger and can cause you real problems as they grow bigger–including total deafness in that ear.
Cordially,
Neil
I’ve had one for over 20 years now, no problems other than the occasional ear infection (once every three to five years!), which I successfully treat with hydrogen peroxide flushes twice a week, for a month. The human body has amazing ways to keep disease at Bay and since the surgeries for c-atoma appear rather “invasive”, I would wait to see how things evolve. I fly, scuba and hardly ever think about it.
I had a “wall down” cholesteatoma surgery, 8 days ago. I am struggling with severe dizziness, ringing and clicking noises in that ear, and sharp pains on that side of my head and jaw. I am very concerned and scared that something might be wrong. I really don’t want to have to travel all the way back to the Otologist’s office. ( it is about a 3 hour drive and with the dizziness, I am frequently nauseated). I have communicated with he office and they tell me that there was a .5% chance of having dizziness permanently. That it should subside in 6 weeks or more.
My surgery was a little over 7 hours. I lost every bone but the stapes. My eardrum had burst over 10 years ago, so I didn’t have it. The cholesteatoma had destroyed one of my semicircular canals and had eroded some of my skull ( between my inner ear and brain… sorry I’m not sure what that is called. I would call it my skull, but am sure there is a technical name). The dr said that the ct scan didn’t show, exactly, how large the mass was.
I have a follow up appointment on August 30th. Would you think, in your opinion ( I know things can happen and you are not the surgeon) that it would be okay to wait until then? There is no bad bleeding around in incision. I have not had any fevers. I still have a lot of bloody discharge coming from the inside of my ear canal, which had to be widened. Thank you for your time and any advice.
Hi Tabby:
Remember, I’m not a medical doctor so am not an expert in cholesteatoma surgery. Having said that, you had pretty invasive surgery that really messed up your ear. Since a semicircular canal was involved, no doubt the others were damaged or at least traumatized by the surgery so I would expect the dizziness. It should subside in time. One of the things you need to do is exercise your balance system so your brain learns how to interpret balance signals correctly now. Vestibular therapy would help it do that. The more you move around, the more your brain learns what is “right” and what is not. Once it gets “squared away”, your dizziness should subside. This will take time. Exercising your balance system will speed up this process.
The ringing (tinnitus) can be the result of the surgery and the resulting ear trauma, or it could be from your hearing loss in that ear–most likely both. Once your ear heals up, any tinnitus from the ear trauma should go away, but if most of your tinnitus is from your hearing loss, then it will be probably permanent. You can learn to ignore your tinnitus and let it fade into the background. In order for this to happen, you need to treat your tinnitus the same as you do any totally useless, unimportant sound. If you don’t attach any importance to it (i.e. you understand it is not a threat to your well-being in any way), then you give your brain permission to ignore it and it will fade away so often you won’t even be aware of hearing it. However, if you focus on it (which makes your brain think it is an important sound to you), then it will never go away.
I think the clicking noises will go away as your ear heals, and so should the pain in your head and jaw. But this will take time too. It may be that all this surgery put your jaw out of proper alignment (so you now have TMJ) and/or your upper cervical spine (C1 and C2) are out. When things are all healed up, you might want to visit an upper cervical chiropractor and make sure you are all properly aligned.
From what you say, I don’t see anything alarming that indicates that you shouldn’t wait until your August 30th appointment. But keep watching your ear and if things begin to get worse–more bleeding or pain, then you should contact your doctor and not wait for the appointment.
Cordially,
Neil
Hello. I had my cholesteatoma removed from right ear in 2015. A followup was then scheduled in 2016 and more cholesteatoma was removed. I’m going to have surgery again this year in November because my doctors suspect it has come back in the same ear. My doctor said I’m in no imminent danger and feels it is okay to wait until November. Reading through all the comments makes me worried. I have been quite fortunate to get my cholesteatoma removed before it was able to cause any major damage and only came out of it with mild hearing loss. I’m only 19 and like I said, the comments worry me. The facial paralysis and damage that can be done to the brain is avoidable with continued care and checkups right? I worry that this cholesteatoma will haunt me my whole life, are there any cases where it hasn’t come back and someone has fully recovered? Do people usually get it in the other ear as well? My hearing in the left ear is perfect and no cholesteatoma has been there.
Hi Monique:
I’m curious why your cholesteatoma is coming back. I suspect your doctors are not getting it all so some is left to grow again.
As far as I know, if they get it all, cholesteatomas typically do not come back.
Nor do cholesteatomas in one ear suggest that you’ll get it in the other ear. You may have a congenital condition that could lead to cholesteatomas in both ears, but it seems you don’t, so I would think it highly unlikely you’ll be bothered by a cholesteatoma in your left ear.
Perhaps you need to have a second opinion from a different surgeon to find out why it is coming back and maybe a different surgeon will be able to get it all this time.
Cordially,
Neil
Hello! I’m glad to see questions still being responded to after over 5 years. My first cholesteatoma (Feb 2014) was fast growing and destroyed my entire left inner ear, caused some paralysis and caused swiss cheese effect in my mastoid, all in 6 weeks. I had excruciating pain. When the pain returned in Oct of that year, I did not wait. All has been well until 28 days ago when that same excruciating pain came back with a vengeance. I’m now seeing NeuroOtology because I also have SCDS and both specialists I’ve seen have denied that the cholesteatoma is causing pain. 28 straight days of pain, only getting 4 hours of sleep a night. I’m feeling very defeated. I’m a mom of 5, youngest being 15 months old. I finally got scheduled for surgery, in another 27 days. I could really use some literature to show these doctors that this CAN cause pain. It started in the ear and was quickly in the mastoid and has since spread towards my cheek, down my jaw and into my neck/throat.
I did leave out that the new occurrence is on the opposite side and it may or may not be important that I’ve had middle fossa craniotomy for the SCDS repair on both sides. The current affected side was done 5/2015, the other side 8/2016
I feel unheard and defeated. Any advice?
Hi Nicole:
You’ve been through a lot (apart from looking after 5 kids at the same time!) Your doctors should listen to you. Whether your cholesteatoma itself is causing the pain, so some pain sensors nearby doesn’t really matter. You need help, and they need to listen to you regarding the pain. Maybe you need more sensitive doctors in there are any near you.
I wish you well with your upcoming surgery and hope it deals with the pain.
Cordially,
Neil
Hello my doctor said I may have cholesteatoma after getting checked out and I have a ringing noise in my right ear going on a little over a month I want to get this taking care ASAP for my CT and surgery but my Insurance wont kick in until 1/1/2019 my symptoms started around 2 to 3 months ago do you think its safe to wait until the new year or I should pay out of pocket which I cant afford now
Hi Amre:
If your cholesteatoma is slow-growing, then there shoudn’t be a problem in waiting. However, if it is fast-growing, then you want it out as soon as possible. See what your doctor says about this.
Cordially,
Neil
and another question sir what is the difference between Acoustic neuroma and cholesteatoma
Hi Amre:
An acoustic neuroma is a benign tumor that grows on the auditory nerve between the inner ear and the brain.
A cholesteatoma is a non-cancerous tumor where skin cells grow uncontrolled (usually through a hole in the eardrum) and accumulates in the middle ear. It may also be the result of chronic otitis media. A cholesteatoma damages the middle ear and surrounding structures and needs to be surgically removed.
Cordially,
Neil
Thank you so Much Mr. Bauman I appreciate your help the reason why I ask about the difference is because if its not cholesteatoma then I may have acoustic neuroma can that be cancerous and can that Wait until 1/1/2019 if its not growing fast
How you doing I have a loud ringing noise in my right ear it may be cholesteatoma its been going on for 4 months is there a way I can at least relieve the ringing I know that it is forever I just want some relief and was there any reported deaths of acoustic neuroma and cholesteatoma
Hi Robert:
If acoustic neuroma’s are left untreated, they can sometimes grow so large they put pressure on your brain and can cause serious problems and ultimately death. But I think that is quite rare.
Cholesteatomas if left untreated can move from the middle ear to the inner ear and from there cause further damage and in extreme cases, affect your brain and ultimately cause death.
I repeat, death is only in extreme cases that are left untreated. Normally doctors can surgically remove both of these tumors/cysts.
If you have a cholesteatoma or acoustic neuroma, the first thing is to get it removed. Then, once things heal up, it is time to deal with the tinnitus. There are a number of things you can do to get your tinnitus under control so it no longer bothers you.
My book, “Take Control of Your Tinnitus” gives you a lot of information on how to do that. See chapters 16, 17, 18 and 19 for specific help on how you can do that. You can get this book in printed or eBook form from http://hearinglosshelp.com/shop/take-control-of-your-tinnitus-heres-how/
Cordially,
Neil
I was diagnosed with a cholesteatoma 21 years ago
The doctor told my mom that it was innocent and just needed yearly MRI’s to keep an eye on it. We found it because I was having dizzy spells and passing out. After a few years of yearly MRI’s my mother stopped taking me to get them and the neurologist signed off that i didn’t have to come back. I am now 35 yrs old, with a husband and 4 kids and symptoms suddenly come back with a vengeance. I have extreme vertigo, headaches, loss of hearing, worst pain of my life in my upper and lower jaw, and recently swelling in my neck….all on my left side, where the Cholesteatoma is located. I don’t have health insurance until January due to job change and I don’t even know where to start looking for a dr that can help me. Back when I was diagnosed my dr said surgery wasn’t an option. Any suggestions to help with the pain until my insurance starts next month? Also what kind of doctor do I need, ENT, Neurologist, or a different kind of specialist? Thank you for taking the time to help me out.
Hi Christina:
The doctor I’d see is an ENT doctor. I’d encourage you to see one as soon as possible. I fear that your cholesteatoma has come out of hibernation after all these years and is growing fast and doing damage. If you are bound and determined to wait until the new year, I’d get on the horn now and make an appointment now for January 2nd.
I really don’t know what to do about the pain if it is really your cholesteatoma acting up. You need to see a doctor ASAP.
Furthermore, I don’t see why your doctor said surgery isn’t an option. It’s the only option of which I know.
Cordially,
Neil
You should do the surgery. I think I went to every ENT in Boise and got many different opinions. Go to someone who specializes in a huge city. There are facial nerves near your ear so the experience level of the dr is paramount.
Hi!
I have extreme pain from a reocurred cholosteotoma. My ent nurses are telling me my pain is from tmj which it is not. I need to find a good doc in the boise area. Can u help?
Hi I have Schedule a surgery to remove Cholesteatoma next month
Can you pls let me know how long it will take me to fully recover. When can I drive? What will I have to go though after the surgery?
Hi Jay:
I really can’t help you with those questions. They are questions you need to ask the doctor that will be doing the surgery. It could be a minor procedure or major surgery depending on the size and placement of the cholesteatoma, so the outcomes could vary by quite a bit.
Cordially,
Neil
I’ve had 3 operations on both my ears for cholesteatoma. This was over 10 year ago. No issues until a year or so ago when I noticed my hearing was getting worse in one ear. I was worried this meant the cholesteatoma had come back so I went to the dr who suggested surgery to improve the hearing with a prosthetic. At the time she said there was no discharge so she didn’t think it had come back. I decided to muddle on through with my hearing aids instead of surgery. A few months ago I got an infection in one ear with foul smelling discharge. Got sent for a CT scan and MRI – no sign of cholesteatoma in either. Got another infection – this time in my good ear – again with foul smelling discharge so I’m pretty convinced it’s back again. Anyway, I was supposed to go for surgery next month but I had to postpone for various reasons and now I’m scared (after reading the comments) that I’ll end up doing more damage to my ears. It’s been postponed for 2 months – is that enough time for the cholesteatoma to do extensive damage?
Hi Lee:
It all depends how fast the cholesteatoma is growing and exactly what it is growing into.
What did your doctor do for the foul smelling discharge–give you antibiotics? Is that still going on. If so, I’d see the doctor again, or another doctor and find the source of the discharge. It may not be related to the cholesteatoma at all. In fact, your cholesteatomas may not be growing back. I think you may need a second opinion.
Cordially,
Neil
Thanks for the speedy response. I have been given antibiotics. Isn’t the fact that I have a foul smelling discharge from my ear, hearing loss and headaches a good indication that it has come back? The dr said they wouldn’t know until they operated on me whether it has
Hi Lee:
Are those the symptoms you had before? If so, it seems reasonable that it has come back. However, I’m not a medical doctor so I don’t know all the ins and outs of cholesteatomas. That is why I suggested getting a second opinion.
Cordially,
Neil
They are, yes. OK, wish I had not postponed it now…
Hi Lee:
You could always ask if they could put you in an earlier slot if one opens up.
Cordially,
Neil
I have just had a CT as my ENT thinks I may have a cholosteatoma. Results show a soft tissue density in the middle ear and the bones are partially opasicized. I am being referred on to an otologist. In doing research on the risks involved with surgery I ran across one that mentioned taste abnormalities. I already have this and had mentioned it to the ENT. Is this something related to whatever is going on with my ear?
Hi Lori:
It could well be. Your taste nerve is close to your auditory nerve, and that is why when people have cochlear implant surgery, they may have taste problems afterwards if the taste nerve is partially damaged. In the same manner, if the cholesteatoma is close to the taste nerve and is damaging it in some way, that could account for your taste problems. I’m not saying this is the case, but it certainly could be. Let your otologist know and see what he thinks.
Cordially,
Neil
Hi.. I’m a 27 year old female and iv just been diagnosed a few weeks ago with a cholesteatoma although it’s not sure how long iv had it for.. I have a bad history with my ears even since childhood countless infections etc, 4 years ago I had mastoiditis that turned into a brain abscess resulting in a mastoidectomy and crainitomy to remove the abscess. Now I have a cholesteatoma in the same right middle ear 11mm in diameter.. would you say it’s nessecary to have it removed quickly due to the fact iv already had lot of serious problems with that ear and have already had a mastoidectomy on that side?
Hi Jassmin:
I’m not a medical doctor, but personally, I’d have your cholesteatoma removed as soon as possible. The smaller it is, the easier it is to remove. As they get larger, they grow into surrounding tissues and bone and become much harder to remove. It just makes sense to remove it sooner rather than later.
Cordially,
Neil
I am 29 and just found out that I have a ctoma.. anout 3.5 weeks ago I started have extremely horrible pain in my ear/jaw, so much that I couldn’t eat for 2 weeks.. I lost hearing, and started having fluid drain from my ear. I was prescribed 2 different antibiotics, a shot of antibiotics and nothing was touching it. I finally made myself an appointment with an ent because I had never had an ear infection as an adult. That’s where the ent dr told me I had one. No ct or xray. I have an appointment with a different ent next week.. but i am nervous! I still have random pains and my lower jaw is still pushed a little to the right and pops or “grinds”… do you think it could have possibly eroded some of my jaw? I know you said you aren’t a medical dr. But the anxiety of it all is driving me crazy… thanks!!!
Hi Megan:
I doubt that your cholesteatoma has touched your jawbone. But the effects of the cholesteatoma may be putting pressure on your jaw bone resulting in pain, etc.
You can rest easy. I’ve never heard of a cholesteatoma growing into the mandible (jaw bone). Besides you are seeing another ENT soon, so calm yourself down and wait for the new results.
Cordially,
Neil
Hello, I was wondering if you had any information about the recurrence rate of cholesteatomas? I can’t seem to find this information in my searches. I was diagnosed with a congenital cholesteatoma at 6- had 4 surgeries to remove and reconstruct. A 5th surgery at 16 to reconstruct again but was told a small residual cholesteatoma was removed. A 6th surgery at 28 to remove an infected cholesteatoma. They did a canal wall down procedure and I was told it shouldn’t reoccur again. I’m 33 now and experiencing symptoms again and wondering whether this is going to be a lifelong routine? Is it normal for cholesteatoma to come back over and over ? Is there any difference in congenital versus noncongenital cholesteatoma in make up or recurrence rates? Is it possible these are true reoccurrences or is it more likely the doctors continue to miss residual pieces of the cyst and I should look for a new team to treat with?
Hi Ashley:
You have a bunch of good questions here, but I am not an expert on cholesteatomas. You should ask an otologist to get the best answers.
However, I’ll give you my gut feelings on this subject. But they are just that–my best guesses.
My feeling is that if ALL the cholesteatoma is removed, then that one should not reoccur. However, if the conditions that caused the first one to occur are still present, I’d think it is possible for another one to develop there, not a recurrence of the first one since it was supposedly all removed.
However, if ALL the cholesteatoma was NOT removed, then it is quite possible that it will continue to grow and need to be removed in the future.
Some cholesteatomas are in places it is hard to remove without damaging your inner ear as they can grow into your inner ear from your middle ear where they normally occur. If that happens, your doctor may choose not to remove all of it and hope it doesn’t continue to grow. So you’d need to ask your surgeon what the score was.
Since you are having repeated recurrences of your cholesteatoma(s), it wouldn’t hurt to get a second opinion and maybe change doctors if you need further surgery.
Cordially,
Neil
Hello! My 6 year old son has had a draining left ear with intermittent bloody drainage for a while. It was always brushed off as a scratch in the ear or just normal ear wax drainage. I took him to the pediatrician because there was a red lump bulging from his ear canal with purulent drainage. He then went to the ENT where they still seen the mass above the ear canal. The ENT suspects a cholesteatoma. He has no pain thankfully, also no apparent facial nerve involvement. Have you ever heard of a cholesteatoma causing an external ear canal lump/mass?
Hi Toniann:
Cholesteatomas form BEHIND the eardrum in the middle ear. So this “bump” is unlikely to be a cholesteatoma, unless it also involves the middle ear and has grown out from the middle ear.
If it is just in the ear canal and doesn’t involve the middle ear, more likely it is a sebaceous cyst or some other condition. In any case, it sounds like it needs medical attention now.
Cordially,
Neil