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I was diagnosed with Cholesteatoma yesterday and i have my scan in 2 weeks time.

I've looked up the disease and am now very scared.

I can't hear at all out of my left ear and wondered if anyone has regained any of the hearing after their opperations?

Really scared as i'm a pro dancer and do not want to loose my balance too.

I'm 298 and have reported this problem many times to the GP's over 20 years.

I've had it since birth and only getting discharge in my ear about 3 months ago they decided to refer me to ENT.


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4 Replies

  • Posted


    I had the operation a week ago, I too was born with a different shaped ear and am quite deaf in the same ear however the past 53 have been trouble free and have worked round it no problem. I say \"what\" a lot but hey who doesnt??

    In August 2010 I had an infection wich led to one thing and another..Last week I had an operation to remove the cyst (the proper name is long and difficult to spell) and a bit of bone that it had eaten into, they grafted some muscle onto the problem area and am told it wont happen again. This is day seven and am having pain obviously, but this is post op stuff, the dizzy feeling is going away a little every day and Im told Ill be OK again in a while. I don't know how long \"A while\" will be though because everyone is differnt so the healing will take its own time. Im a biker and have banned myself for a couple of weeks! Please try not to worry and go ahead and have it fixed, the alternative is quite nasty and perminant

  • Posted

    My 16 old son had first surgery 7 months ago, the chyst was removed from his left ear that was just 2 mm from his facial nerver. The op was 6 hours. After 3 weeks after the surgery he was able to play soccer and tennis. In one month he will have a second surgery to check if cholesteatoma is not growing anymore. The CAT scan is not always correct with the results. You will be fine!
  • Posted

    Dont worry in two weeks time i will be having my third operation ur recovery will take several weeks and the docs will keep a close eye on u for a while but theirs no reason for u not to lead a normal productive life so cheer up x
  • Posted

    I had a mastoidectomy 30yrs ago and the operation was a huge success. I now have cholesteatoma in my other ear.

    I have never had the 'text book' problems, never had a problem with balance, of course hearing is a little affected when in crowded noises places. Otherwise no problem.

    Do your research as I am now doing to find the best otologist surgeon. It is a little frightening, and it is a big operation I was a teenager the first time round, its is so much better when you are younger so mums don't worrysmile

    I would do anything to find the original surgeon I had from 1980. His work has been admired around the globe by ENT doctors. They always ask me "Who did this amazing operation?" He was a genius and sadly I can't remember the magicians name.

    Good luck everyone, research research research..

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