coloseatoma: hi, I'm new to the site, have had to... - deafPLUS

deafPLUS

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coloseatoma

dama61 profile image
6 Replies

hi, I'm new to the site, have had to join multiple groups, but my ears are the biggest problem ive ever had, ive suffered constant infections as far back as I can remember, now its been confirmed I have a colosteatoma, and will need surgery on this, ive read up on it but still want some advice please, ive had tinnitus since childhood, but will having the mastoidectomy make this worse? how long can I expect to be hospitalised? will the colosteatoma come back after surgery? am I likely to get another one in the other ear? so many questions, I'm waiting for appointment to see a surgeon, it was only diagnosed last week, sorry

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dama61
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6 Replies

I've had several cholesteatomas - it's usually just an overnight stay. It's so important to get it removed as they're incredibly damaging. My ear has been destroyed by them. I've had somewhere short of 20 surgeries (I'm 33). They can return but they don't always. I don't know about the tinnitus - I've had a mastoidectomy and not developed tinnitus but I know it's one of the risks of any ear surgery. I've only ever had issues in one ear but if you have problems in both then it's a possibility I'd imagine. I've literally never had an infection in my food ear (plagued by them in the bad). I totally understand your feelings about your ears. I am waiting to find out if they're going to obliterate my middle ear with fat and close the whole thing off - I'm totally torn between being utterly horrified and totally relieved at this point. There's nothing stopping you having successful surgery and preventing ear infections and your problems settling down :) I hope that's the case for you :)

in reply to

Good ear not food ear!

dama61 profile image
dama61 in reply to

20 surgeries? not all colosteatomas I hope? Ive had countless surgeries also, ranging from grommets to skin grafts on the eardrums, I hope your fore coming surgery helps you, :-)

in reply todama61

No no, not all cholesteatomas - only a few of those. Lots of reconstructions and trying to connect hearing bones (where stapes had disintegrated)

Thanks dama- good luck with your surgery & keeping your ear dry :)

Freebird_UK profile image
Freebird_UK

I cant help but wish you well, I have had tinnitus since 1990, you have done well finding ways to cope for so long.

dama61 profile image
dama61 in reply toFreebird_UK

ive never known any different, so its been a way of life, thank you for your comment

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