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Recurring Cholesteatoma?

Posted , 6 users are following.

readheaded
readheaded

Hi, I'm new here and am wondering if anyone has had a recurrence of their cholesteatoma after many years?  I had ear issues in infancy which were diagnosed when I was five as a branchial cleft cyst and cholesteatoma. The cholesteatoma was removed 40 years ago.  Ultimately, my ear bones and ear drum were destroyed by infection and as a child, my ear drum was reconstructed with skin grafts.  Later, as an older teen, I had ceramic earbones implanted.  My hearing is stilll very poor in the affected ear (20%), in part because my ear canal is very distended.  When I was 12, a massive infection in my neck and ear necessitated the successful repair of the branchial cleft cyst.  I've never had "traditional" ear wax in the ear, but rather a non-purulent scab-like build up inside the ear.  Hearing loss aside, I haven't had any issues with my ear until the last six months when my ear has been aching off and on, I have intermittent clear discharge that "crusts", a reddened ear canal, intermittent "popping and cracking", and a tiny enlarged lymph node in my neck.  I've been treated with antibiotics for an ear infection a few times now, to no avail.  Could this be a recurrence?  I will be seeing an ENT soon.  Thanks!

0 likes, 3 replies

3 Replies

  • scastell2107
    scastell2107 readheaded

    Posted

    Hi Readheaded, I had a recurrence of Cholesteatoma for years when I was little. I believe I was just a Toddler when they diagnosed me with Cholesteatoma. I started talking at age 5 due to my hearing problem. My right ear was the one that had Cholesteatoma and so I could not hear out of my right ear but my left ear was blocked with fluid from my right that I couldn't hear either. I've had so many surgerys I can't even remember how many I've had. From when I was a toddler to 6th grade was the worst. I remember a time when It was ridden and thought I was fine but then It came back. I remember though 6th grade was my final surgery. It never came back and to this day I'm a little scared it could come back. After that though, it wasn't over for me. I was then diagnosed with a tumor in my gums. I had my first and final surgury for that so I'm happy I didn't have to endure so many surgerys. As for you issues, I can't really determine on what is going on whether If your cholesteatoma has returned. I'm sure your doctor will confirm though. Hope you find out soon!!  
  • theresa65936
    theresa65936 readheaded

    Posted

    Your story soinds like my daughters; she is 27 now and is having her 5th surgery today for a skin gtaft (the second for skin grafts) She has it in both ears and they informed last week she will have to deal with this for the rest of her life; everyone is different i dont want to scare you!  but any discharge

    should be looked at.

  • Figtree
    Figtree readheaded

    Posted

    Hi Redheaded,

    how did you go at your appointment? 

    Was ther a recurrence of the cholesteatoma that caused the symptoms?

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