Recently diagnosed with Cholesteatoma

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I just received a diagnosis of large Cholesteatoma in the right ear. I have had bad ear infections off and on for years. Also, issues with balance for many years. The hearing test confirms total hearing loss in right ear. Some high-frequency hearing loss in left ear. I will be getting additional MRI and a CT Scan to confirm the scope of the damage with surgery to follow.   Per the specialist not only will I not regain any of my hearing but I will lose all vestibular /balance function in my right ear. They will essentially seal up my right ear after surgery.   

Has anyone else out there been through such a complete loss of function in an ear after having a Cholesteatoma surgically removed? Any other advice also welcome.

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4 Replies

  • Posted

    HI Rachel,

    Unfortunately I have not seen any other way to cure these things. Is your other ear ok? If it Is I would probably have the surgery.

    Beware of after effects like infections, and when you kill the infections, fungus infections.

    Good Luck


  • Posted

    Just to say there are a couple of good Cholesteatoma Facebook groups that are def worth joining for shared experiences.  
  • Posted

    Where do you live? You might wanr to take a second opinion before you do a surgery like that.
  • Posted

    Hi Rachel,

    I have had the same surgery in 2007.  This disease took all of my hearing bones and destroyed my mastoid so my surgeon obliterated the mastoid and sewed my ear canal shut and attached the abutment for the BAHA. This was the best thing I ever did. I was  48years old and had lived my entire life with ear infections and if I ever did get water in my ear, severe infections that took weeks to clear up. With a cavity in the mastoid, a suction machine had to be used on my ear @ every 3 months and antibiotic powder put in. I did have quite severe pain for 3-4 days post-op and did spend 2 days in the hospital. I have a pretty high pain tolerance but it was pretty bad. I will mention that I had to have both a bone and muscle graph for my surgery. Since then I have been able to swim and shower with no issues.... until August when my eardrum in my left ear ruptured. I have gone through surgery to repair that but my hearing is not coming back. I will be getting the abutment and BAHA for my mixed loss hearing in the left side on May 3, 2018. It’s a necessity for sure, as this disease can eat through the scull and into the brain and it can cause death.  Trust your surgeon. 

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