I am 14 years old and was diagnosed with cholesteatoma on friday

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Hey my names Beth im only 14 and on friday i was told i have cholesteatoma. Naturally im terrifed and upset but i have been doing some research and really want to get some opinions on how other people's operations went. I've had ear problems since I was about 3, constant infections, then i had gromits, then i got a paracite and a growth in my right ear leading to a very deep retraction pocket.

I would be very grateful for any replies! Also i am a 100m runner for my county and am extrememly worried that my balance will affect my perfomance?

Beth x

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  • Posted

    Hey Beth

    I am 18 now , but when also 14 it was discovered that I had a cholesteatoma. I was an avid sportsman - particularley swimming (not as impressive as playing for my country though, WOW!!) and I can definitely say that my cholsteatoma totally changed my sporting career, at least for a little while.

    After 2 surgeries and biannnual routine check/ups and ear cleanings, I am currently cholesteatoma free. However, I can't really swim anymore (technically, no water is allowed to get in to my ear), but this shoudn't be a problem for you anyway. Your question regarding balance - my balance is sooo much better now than it was right after my surgery. My first surgery was all good ( I left the hospital the same day!), and I recovered really quickly, and my balance was not affected at all. During my second surgery, however, my middle ear was overly fiddled with and I literally woke up vomiting from dizziness. This stayed for a couple days and I was kept at hospital on a drip for fluids/nausea and all that ickiness. For a long time afterwards, by left ear/head felt heavy and my balance felt way out of wack, and my head would often spin during sports/ yoga.

    However, it's gotten way better over time. Also, you learn to get used to it too, and you are able to cope with it way better. Your body does an excellent job at learning to deal with the imbalance. Don't let it worry you so much. (also,regarding balance,  everybody is effected differently and I guess it depends on the invasiveness of your cholesteatoma, too - you might not even be affected at all smile but it's so positive to see you asking these kinds of questions)

    I wish you well for your surgery (Have you had it already?). I'm sooo glad that you reached out and shared your worries. It's good to know there's a community to chat with. 

    All the best, Emma x

    • Posted

      Hey Emma 

      gosh reading back on what I wrote has brought back all the fear I felt. Im fine, its so good to say that but i'm honestly fine now. The recovery was gruelling but i've been sprinting since and gradually i'm getting back to how I was and my time is decreasing. Its sad not being as fast as I was but im dedicated and i'm feeling more like me. I had suction yesterday and they said both ears are looking good 

      I'm honestly so relieved and thank you for reaching out

      Im happy youre all good too

      always here, Beth x

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