← Return to Cholesteatoma: Anyone else want to talk?
DiscussionCholesteatoma: Anyone else want to talk?
Ear, Nose & Throat (ENT) | Last Active: Feb 13 12:54pm | Replies (42)Comment receiving replies
Replies to "Hi @genuinekim, welcome to Connect. I'm tagging @funkynotes who has also talked about cholesteatoma. Kim, has..."
As a child, I had many ear infections (50’s & 60’s). Was experiencing hearing loss in right ear when I met my husband. We obtained 3 medical opinions (the first 2 were so different). Underwent mastoidectomy right ear 1984. 6 months later they went back in & grafted a new eardrum. 4 ‘maintenance’ surgeries followed over time. In 2006 experienced hearing loss in left ear. Dr performed stapedectomy then surgery to remove “scar tissue”. Don’t think he knew what he was doing. Things got worse. By 2010 new surgeon went in and the cholesteotoma (!) had spread to my skull!! Removed disease and entire middle ear canal. On pain meds for 2 weeks (& I have a high tolerance for pain!). 2 years later I had titanium implant surgically inserted behind left ear. After months of healing, I acquired a Ponto hearing device. In fall of 2021, I had surgery for a second cholesteotoma in right ear. Have moved from Ohio out West to be near my son. I insist on checkups every 3 months. Do not want to go through this again.
Yes to both. After my first two surgeries I had a about a 40% loss in my effected ear. My most recent audio test showed a 89% loss. The reoccurrence destroyed a portion of the mastoid bone and left horizontal canal fistula,