r/cholesteatoma

19M here. Dealt with reoccurring Cholesteatomas starting at around 13 and probably somewhere around 6-8 surgeries until my CWD Mastoidectomy Tympanoplasty Canaloplasty something something something in December of 2024 when I was 17.
I’m pretty much fully deaf in my right ear, which is enough of a bummer as a musician, but one of the things that really gets to me is the fact i’ll never be able to just... hop in the pool on a whim…. take an unplanned shower… scuba dive. I’ll always have to have a cotton ball and vaseline handy, or earplugs, or have to just keep my head out of the water. It just makes me sad, because I always loved swimming. Does anybody relate?

17M I’ve had cholesteatoma since I was five and have had dozens of surgeries since then to remove it and rebuild damage. Recently my doctor suggested a canal-wall-down mastoidectomy which I received last week. What are others experiences with it, especially at a young age. What are some problems that arose or things I should look out for

Ugh, when does it end? Had 5 surgeries, one of them was mastoid obliteration, where the chance of recurrence should be something like 7%?
It returned anyway so minor revision surgery was done one year later. And guess what, it’s still coming back! I’m so frustrated and feeling hopeless. I hate that the only option is surgery.

My ENT is also an otologist and specialised in cholesteatoma surgery, but still he can’t seem to fix it :(.

I asked if he can discuss my case with other ENT that have experience with cholesteatoma surgery and I have a call with him next week.

I don’t know, I just wanted to write it off, thanks for reading.