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rob76554 rob76554

Anyone only have one surgery?

I keep reading these stories of everybody having multiple surgeries. Has anyone only had one surgery, and never had their cholesteatoma come back?  I've had two surgeries, one to clear the cholesteatoma when I was 10, and one to clear scar tissue on my rebuilt eardrum, and check if there was any residual cholesteatoma. I have no ossicles, as they were removed during the first surgery, and I have about 60% of my hearing. Now at 36, my ear is staring to feel full, no pain, no draiange. I suspect it might be a sinus infection, and wax build up. I have an appointment with a new ENT on Thursday for a micro-suction cleaning. I'm hoping all goes well and my cholesteatoma hasn't returned after 26 years. Thanks everyone. 

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  • Michelle 86 Michelle 86 rob76554

    Hi

    Some people who has had colesteatoma may only need one operation to remove it and that has worked. Unfortunately it is something you can never really relax with because there is always that risk it may come back.

    My son was first diagnosed when he was 7. He had it all removed which took 9 hours in theatre it was very extensive. He lost all hearing in that ear all the small bones the lot.

    We was hopeful that would be the end of it but sadly it wasn't. We was told it may come back and that Jake would need regular ear suction micro suction to clean his ear.

    Sitting months his ear stared chucking out green smelly puss and the colesteatoma was bad.

    He is now 13 and has had 5 massive operations to remove colesteatoma. He is completely deaf of that side and his balance organ has been destroyed to. He is currently going for another operation on 19th Sept again to remove more.

    Jake always says when it's really bad he feels full in that ear and often has symptoms of Sinus problem.

    Go to dr and get the to refere you to ent. Don't let it go on to long as it will become very bad. I have always been told you can fully relax and that there is always that chance colesteatoma will return.

    Good luck

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