Ah, so… as much luck would have it. I apparently developed another cholesteatoma, this time in my right ear. I went for a second opinion last year. My local ear specialist has known something was developing but his ‘let’s keep an eye on it’ approach wasn’t working for me. Turns out, it was a good thing I got a second opinion.
My new doctor at Johns Hopkins Hospital, Dr. Howard Francis, has excellent credentials and WAY better bedside manner than Teixido. He did a CT scan right away and determined an immediate surgery to clean up a large cholesteatoma was needed and possibly a second surgery to do the rebuild. So my first surgery was in June and my second one happened three weeks ago.
The first surgery went well. I was a little nervous though. My first radical mastoidectomy was almost 15 years ago and the long term affect of losing taste and some feeling in my face drove me nuts and lasted for months. I woke up to a surprise that he had been monitoring my facial nerve and I had almost no side effects (vertigo, loss of sensation), other than apparently the c’toma was sitting on the stapes (conducting sound) but that had to be removed, so the hearing loss in that ear for a few months was pretty dramatic.
He decided the rebuild should happen after opening up again and ensuring the disease had not returned, so I picked January (as the holidays were going to be crazy).
I was all set for the second one with high hopes of a quick bounce back. I even mapped out a tummy tuck and boob lift just in case someone read the notes I put on the chart before surgery (well, everyone kept asking what I was there for, so I gave it a try and told them “boob job and tummy tuck”). Maybe someone would go for it.
Anywhooo… I woke up with no sense of taste of sweet or salty, I can expect that to last a few months. On the positive side, I can honestly say I can diet and not cheat… so I’m down almost 7 lbs. But the bad part is that I have vertigo that I can’t seem to shake. They are saying it is ‘positional’ vertigo and will likely need PT, but honestly I can’t even walk quickly–it isn’t just changing position. I’m taking steroids in case inflammation is what’s causing it. I do know that surgery can trigger an MS flare up but I think it’s too early to go that route in my thinking.
I struggle whether or not to go back to Teixido and tell him what the other doctor found. It was upsetting for me that his ‘wait and see’ didn’t include regular (or any) CT scans, but the bigger part of me wants to just move ahead. The lack of taste is bumming me out. I’m dying to enjoy a potato chip… or a chocolate chip. And the vertigo, ugh. Sorry, feeling negative right now.
