Story about Chlosteatoma

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I decided to make a completely different discussion board because there were so many forums about Chlosteatomas I wanted to reply to and I felt the need to do a general discussion for anyone needing advice/wanting to read. It started with ear infections! it was like they never ended and all the ENT would do was clean my ear, give me medicine, and send me on my way. I tried ear tubes and had ear tubes in both ears twice on each side (my right ear is my main issue). and finally I went back with a really really bad ear infection when I was about 16 and cried and asked if there could be something else going on causing these ear infections, He sent me in for some kind of head scan and a pretty good sized Chlosteatoma was found in my ear. I didn't have any symptoms other than my ear infections. They told me it was benign but I would need surgery. I had surgery and they removed the chlosteatoma and I lost a great percentage of my hearing. The tumor had ate away at my hearing bones, my ear drum, and I believe they said I had one hearing bone left. I lost my hearing after the surgery because they called the Chlosteatoma a "hearing tumor". Im not exactly sure what that means, but I could still hear when i had the tumor and when they took it out I barley had hearing left in my right ear (only one effected). The surgery i got to remove it wasn't bad. i recovered pretty quickly. The doctor who removed my tumor sent me to a doctor who could rebuild my ear drum and hearing bones. So I went in to this doctor for surgery and he rebuilt my ear drum pretty much successfully. The next step was rebuilding my hearing bones after making sure my ear drum was successful. I was supposed to go in for another surgery but the doctor to do my next surgery who had rebuilt my ear drum had a medical leave and two years passed and by the time the doctor got back to us and told us he wasn't coming back. i was referred to another doctor who rebuilds ears (not many of those) and by the time I got to him he told me there was nothing he could do and basically my ear drum collapsed in. Im not sure if it is because I had ti wait so long for the doctor to tell us he wasn't coming back and if he had not left my ear drum wouldn't collapse, Im not sure. Maybe the surgery wasn't successful as I thought. I could be a number of things. But basically where I am at now is a messed up ear that can't clean itself, I can't get water in it, I have very bad balance issues, and if a gust of wind to strong gets in my ear or water, the world spins!!! My only options is getting a choclear hearing aid. I cannot get a regular hearing aid to go into my ear because no air would get into it and because it already does not clean itself. Therefore the choclear implant (if that is how it is spelled) is my only option. Im only 21 and it is defiantly scary to think about but this is my only option and I just turned in my papers to get ready to schedule a surgery. Im not sure when the surgery will happen but I will update after the surgery as well and how i like the implant. I'm sure others has been left with this option hundreds of surgeries or appointments later but reading up on it, i'm ready to try this out and hopefully be able to hear right without saying "what" every sentence and having to read lips. smile I have to admit I cried and thought of every situation and thought how did it end up like this. but i believe in the long run, this would be good for anyone in this situation, especially after all options were stressed like mine were. 

I hope this has helped someone in the long run and if there are any replies asking questions, id love to answer or help in anyway I can! I'm 21, from wisconsin and have had problems with this for years. I hope this has cleared up some things for some people. 

- Haley 

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    I am sorry to read this, this kinda is the same with me. Since 18 months old I had constant infections it was only at the age of 19 they realised I had a tumour and removed it. I was then dismissed from ENT and never told it would return. 

    Now I’m 38 and have in the last two years had constant problems with cholesteatoma returning, having this removed again I can hear the same if not a little better but it was so bad as it was left that my ear is in a bad way and won’t be corrected.

    I have constant dizziness and facial pain and reoccurring infections and nothing seems to help.  I think I’ve come to realise this is it now for me, at least I can hear without aids even if I do struggle x

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