Hey all
Just wanted to say how amazing it is for you guys to have a forum to come and talk about your experiences with AN. I had an mri around three years ago for migraines and they found a mass in my Clivus which they thought was a chordoma (rare form of cancer). Hasn’t changed in three years and is small so just watching. On a follow up MRI they found another 3mm focus of enhancement in my left internal auditory canal, suspicious for a small schwannoma (which is the same thing as a AN apparently?). Was referred to an Ent but then Covid started and left NY at that stage. A year and a half later I was trying to book a follow up mri, unfortunately they’re backed up. Used q-tips for ears for a few months which is a huge no no I’ve found out, had my ears cleaned out because of pain and they were blocked with wax. Was fine for a week and a half but then had constant tinnitus in my left ear (where the second enhancement is). Not sure if it’s from the cleaning, q-tips, or the mass has grown and is causing it. My question is, how did you guys pick a surgeon? It seems AN surgery is quite risky, I was like, should I go to Mayo Clinic since they’re a top hospital or is mskcc or mass gen good as well since they’re all top hospitals etc. Or is the surgeon more important?
Thanks all!
Ps I know I could be jumping the gun a bit since it was small in my last scan and some of you guys have big tumors etc. I just like to be prepared, same thing I did when they thought I had Chordoma, better to be educated early etc, and surgery sounds scary with mortality rates.
