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Cholesteatoma: Anyone else want to talk?

Ear, Nose & Throat (ENT) | Last Active: Oct 14 1:28pm | Replies (39)
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@charlie4

If so, I possibly have it. I had meningitis from a bad ear infection and almost died a year ago. I am completely deaf in that ear and doc wants to remove all inner ear dead structures by cutting out a piece of skull, removing the debris, and sewing ear shut. Sounds barbaric. I am dizzy as hell every day now for a year. Haven't had a second opinion on a treatment. No new infections in that torn eardrum with exposed inner ear parts. Any ideas from docs at Mayo clinic to resolve my problem? Really need medical advice from experts. Can't go on this way. Charlie4

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Replies to "If so, I possibly have it. I had meningitis from a bad ear infection and almost..."
John, Volunteer Mentor | @johnbishop | Jan 14, 2023

Welcome @charlie4. I'm sorry to hear that you have not been able to get any answers on your condition. Mayo Clinic medical professionals do not monitor these discussions. Connect is an online community where patients can connect with other patients and give and get support.

If you would like to seek medical advice from Mayo Clinic experts, please contact Mayo Clinic directly. You will find the phone numbers and an online form here: http://mayocl.in/1mtmR63

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dserro | @dserro | Jan 15, 2023

Sorry you have gone through this. I had a similar situation but luckily was caught before it got as extreme as yours. I had ear infections my entire life, tubes, etc. They had somewhat subsided as an adult, but reared its ugly head when I was 46 years old. The doctors at Mayo Phoenix discovered that the cholesteatoma and infections had eaten through my middle ear, ear bones, and skull and my brain was exposed. They scheduled me for surgery immediately, but in the 3 weeks I had to wait they warned me about the signs of Meningitis. The Neurotologist at Mayo was able to rebuild my ear, plug up the hole in my skull, and gave me new hearing bones. My hearing loss is only at about 30%. It has been 7 years now I am forever grateful to the skilled surgeon who probably saved my life.

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