Hi All,
Thought I'd give an update. I'm scheduled for CK week of Nov 8 at Stanford with Drs. Chang and Gibbs. Last time I checked in, I had just heard back from a CK unit in the midwest who advised surgery. This took me very much by surprise as it was a radio onc. recommending it. I subsequently sent my MRI CD to Drs Medberry and Chang who graciously reviewed it and responded that I was a candidate for radiosurgery. Dr. M did advise I go somewhere with some experience - likely because it's butted up against my brainstem? Mayo clinic also strongly advocated experienced centers. So 4 of 5 docs said RS was ok. I got tired of trying to figure out who in this neck of the woods has enough CK experience, so decided to go to one of the big guys for peace of mind. Lodging will cost about the same regardless of location (we'll economize as best as possible). Anyway, I've been a bit down, feeling saturated with information, etc, but am now very glad to be getting this rascal taken care of. It's gone on a bit longer than I had hoped, due to scheduling conflicts on my side and theirs, but when it's all said and done, I'm likely only about 6-7 weeks longer than I'd originally hoped, and will be 6 months out from dx. No new symptoms, but original ones flare more and are a bit worse. Tinnnitus louder and more constant, ear fullness and pain/burning that goes down into my throat.
Once again, I want to thank all of you for everything. It was this board and the CK support forum that helped me so tremendously when I was first diagnosed. Take care. Mona
