Ive known about an cholosteotoma in my right ear for about 6 yrs. Its gotten worse in the last year, ive got all the classic sympthoms. Ear drum sucked up against the bone, constant drainage and infections and lots of debri forming.
My ENT finally said ok Im arranging a visit for you with a top surgeon that does this surgery.
I saw him and he explained alot of things I didnt know and im going for MRI and CT scan tues…another visit with him Jan 30th its easier to get an appt with Potus or the pope. Then surgery will be performed.
He told me do not expect any improvement in my hearing, you could see an improvement and at the very worst be deaf. He was very honest and upfront with all that could happen, to describe my hearing briefly it just sucks.
He said hes going to enlarge my ear canal to reduce the chance it will regrow, but he said it could grow back and necessitate another surgery.
“Ive known about an cholosteotoma in my right ear for about 6 yrs.”
From what I’ve read, the only time an ENT advises against surgery for a suspected cholesteatoma is for the very elderly / infirm who have a limited realistic lifespan (<5 years). If this is not the case for you, I would question why you were not advised to have surgery 6 years ago.
I had the same symptoms - About a month after a cholesteatoma was identified on a scan, I had the full CWD surgery (canal wall down, where they drill out the mastoid bone & enlarge the ear canal) and had a 3cm cholesteatoma removed. It had dissolved the ossicles and ruptured the semicircular canal. My facial nerve was not damaged, but had it been left for much longer it could have been severed.
I don’t think the way ENT doctors explain Cholesteatoma to affected patients is very good - It’s not really to do with your hearing at all. Basically, if you have a cholesteatoma, you HAVE to have it out. It’s growing inside your ear, slowly eating its way through your hearing bones, it’s working its way towards your cochlear and balance organs. Given enough time it could well find its way up into your brain. In many cases, cholesteatoma is only diagnosed after it cuts the facial nerve (so one side of your face droops). It’s potentially much more serious than just affecting your hearing.
The weird thing about Cholesteatoma are that they often “mask” hearing loss - the tumour can effectively take the place of the ossicles that it has dissolved, and conduct sound from the ear drum to the inner ear. Sometimes, people with long-term hearing loss actually report improved hearing in the period up to being diagnosed with cholesteatoma.
Your hearing level after the surgery will depend on how much damage it has already caused. The surgeon may be able to reconstruct the ossicles - but even if this isn’t possible then you could be fitted with a BAHA which will help you hear (probably even better than your current hearing).
There’s a great support group for Cholesteatoma via Yahoo - loads of people on there who can offer advice.
Good luck!
Good question Dave 
My ent at the time sent me to a very experienced surgeon whos specialty is Cholosteotoma, he examined me and recommended It be watched he didnt feel surgery was necessary.
Well 6 yrs later I was sent to another surgeon who is out of Shands Hosp and what im told is he is better…My ent and my family doctor. He impressed me more than the other.
This surgeon Dr Antonelli, explained alot more, no one ever told me what cholosteotomas could do, paralyze your face and other niceys. He recommended it come out asap and im in the process…mri and ct scan tomorrow, another visit and the surgery set. Im 65 in good health, no heart condition, no history of any no diabets, no high BP etc…
My ears make my life miserable, I have bad eustacean tubes. My ears are always clogged my hearing is profound loss and when my ears clog which is often im for all intents deaf. They leak on my pillow and the surgery will fix none of that…he tells me stop the leakage and infections hopefully…
I asked the surgeon will I hear better in that ear…his instant response was I dont know. It can go the whole range of better to deaf. He was honest and I appreciated that.
My audiologist and the audiologist in my ents office said my hearing has worsened in both ears…Ive experienced sudden hearing loss in both ears near deaf 3 times in the last 14 mths…steroids brought it back twice, this last time my left ear has not come back.
Thank you for your post I will look up that support group
I had the surgery March 5th and I hear next to nothing in the ear the cholosteotoma was removed from. The surgeon tells me theres still packing on the inside that has to be broken down by my body and he said the recovery is a full 4months. I cant wear a hearing aid in that ear for another 3 months then sparingly when I go to dinner but he doesnt want it in all day or for long periods. Im staying positive and hoping I get my hearing back to at least what it was. My right ear was my better ear, my left I have 40% speech understanding. I cant use the phone with most people. Some I can follow but any higher pitched voices or fast talkers or mumblers im done.
I just had a caption phone installed for must have conversations.
My poor wife is suffering more than I am, she has to translate what others say so I can lip read her. She makes my phone calls, taps me when someone has said something to me so I can acknowledge them. Hey life is what it is and you have to go with it. Im staying positive that my hearing will come back in that ear
Hi zip I’m having a cholosteotoma removed from my left ear soon. Was just wondering how things are going now days. Has your hearing improved at all. Do you still get infections etc?
Following an ear infection a few weeks ago I was referred to hospital and identified as having a cholesteatoma in my right ear and am now awaiting surgery to have it removed and a graft to repair it. Has anyone else had experience of this - what was the op like, how quick was your recovery, and are you now able to swim, fly etc?
Emily, I had the surgery in 1999, the cholesteatoma had engulfed the entire middle ear of my right ear. The process involved two surgeries about 1 year apart. The first surgery removed the cholesteatoma, including the middle ear, and a portion of the mastoid which also was affected. Full recovery was about 3 to 4 months and I could only wear my left hearing aid during that time. Virtually all hearing in the right ear was lost, although I did have some bone conductivity which helped with the lower frequencies. The second surgery was performed 13 months after the first to confirm that the cholesteatoma had not returned and to reconstruct the middle ear which had been destroyed by the cholesteatoma. Reconstruction was successful to a degree in that a fair portion of my lower frequency hearing was restored, but I still lost most hearing above 2K. Hopefully, advancements have been made over the past 20 years. As far as physical activities following the surgery, I was able to resume normal activities (swimming, running, sailing and flying) about 30 days following each surgery.
i am to much worried about my lose of hearing 