What is a cholesteatoma? Lend me your ears (again)!

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In my initial blog (which you can read here), I explained the many ear problems I had in my youth until a few years back when my hearing in my left ear was so bad that I returned to the Ear Nose and Throat Doctor.  He discovered that I had a cholesteatoma, basically a mass of skin that had curled itself around my middle ear bones and if left alone, would eventually increase in size until it pressed against my brain.

The cholesteatoma was successfully removed in January 2013 and then in the December of that year (I had to wait twelve months to check the mass would not regrow), the ENT attempted to fix my hearing by reconstructing my middle ear bones.  The operation was successful and for a good six months my hearing was perfect.  Then after I got a cold that turned into an ear infection, my hearing became worse again and the ENT discovered that scar tissue had overtaken the reconstructed bones and basically all the good from the surgery was undone.

Of course, on a positive note, the initial problematic skin had not and did not look like it was returning at all.  I had my third baby the following year and while I was told the reconstructive surgery could be redone, I didn’t want to have the operation again until she was a little older.  There was always the possiblity of purchasing a hearing aid but at the time I was at home with my kids and not working so I didn’t find my inability to hear out of one ear very much of a problem – and my kids are pretty noisy as it is, what can I tell you?  Tests show that the hearing in my right ear compensates by being above average anyway – how amazing our bodies are!

Now that my little one is almost two, I thought it might be time to have one last go at the reconstructive surgery.  If it didn’t work second time around or fell apart afterwards like the last one did, I would go for the option of a hearing aid.  A few days ago I had the surgery to fix my hearing again.  The ENT warned me he wasn’t really one hundred percent sure what he would find – he may not be able to reconstruct anything, it all depended on what he found.  Unfortunately, he found something I wasn’t expecting.  Under the collapsed prosthesis from the last surgery was a new tiny cholesteatoma growing.  This was very disappointing to hear but it was of course lucky that it was found at all.  The ENT removed that and tried to fix up the prosthesis.

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He told me that it was possible my hearing is fixed with what he has done in this surgery but it is more likely that I may need another operation in twelve months time.  He put in a permanent grommet (or tube) in my eardrum which hopefully means that my ears won’t be easily infected again and stop the prothesis from being sucked in from the negative pressure.

Since writing the first blog about my cholesteatoma, I have received many messages from other bloggers telling me about their experiences with this medical problem.  There is not much information about cholesteatomas and they seem to be more common than we think.  While my blog is a great way for me to explain to all my family and friends at once what is going on with my hearing, it has been nice to know that other people who have the same condition feel a sense of relief in realising they are not alone.

I also think my blog is a great platform to raise awareness about cholesteatoma as well.  If you know someone who is complaining of hearing loss, or the loss of taste or sense of smell (particularly if they have had problems with their ears), please tell them to see their doctor and get it checked out.  Fingers crossed that this latest operation does the trick for me!

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