Cholesteatoma: Anyone else want to talk?

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.

I would like to comment about cholesteatomas. I have had 3–1 in my left ear, where I am now deaf and have a titanium rod and wear a Ponto 5S; 2 in my right ear and I do have a mild hearing loss in that ear. My first surgery in 1984 was in the right ear. The disease was removed along with 2 hearing bones and the eardrum. Six months later they went in, grafting a new eardrum. The prosthesis moved and I needed 3 surgeries over the following years. In 2021 I had another cholesteatoma removed. In 2007 I noticed hearing loss in the left ear. Unfortunately, my surgeon had retired and I had to try a second doctor. First a stampedectomy was performed, 2 months later alleged scar tissue removed. Hearing on the left was terrible. In 2010 I fainted (due to P.O.T.S.) and fell forward smacking my jaw on a concrete floor. Worried about ‘jarring’ things in my ears, I followed up with a new otolaryngologist who had arrived. She found cholesteatoma in the left ear. The disease had spread; surgery was extensive-the entire middle ear canal was removed. This resulted in a surgery to place the titanium rod being placed, more healing and then I received a Ponto. All this started at age 29 as a result of so many ear infections when I was young. I am now 70, and I’ve adjusted. I hope I don’t have to go through any more with my ears.