The Internets!

I guess maybe the first week I was in too much of a daze to try to research. Maybe it was the vicodin. Now I'm playing catch up and reading as much as I can. As it turns out, when you use the misnomer "acoustic neuroma" to look for vestibular schwannoma, there is even more info out there. The internet is a crazy place.

After reading a bunch of stuff on these types of tumors (typically abbreviated AN, though it drives me crazy since that name is technically not right), it seems like mine is a little extreme, at least if I'm understanding everything right. For example, the CT scan report says that my tumor is 4.8cm x 1.8cm, and is displacing my left cerebellum and pons. According to this chart and graphic, that would make it a stage IV. Perhaps I should consider myself lucky rather than unlucky if that is the case. "Finally in Stage IV, if untreated the tumor will deform the cerebellum, possibly resulting in writing and gait problems, and/or the brainstem. It can block the flow of cerebrospinal fluid (CSF), causing hydrocephalus (pressure on the brain) and eventually lead to coma or even death." I don't have any of that. Yey!

I also found some patient reviews Hopkins and of course it's all good. Specifically there are a lot of good reviews of Dr T, the one I'm going to see on the 3rd. I found this checklist of questions to ask so I can take that with me. Wish I had that last time.

This website has a pretty good generalist explanation of surgery including the approaches and possible outcomes (with references!). I'm sorry that at this point I'm using the blog to kind of catalog different web things I find.

Today I'm feeling a little out of sorts. I just want to sit in a quiet corner for awhile. My ears and head have a 'full', throbbing type feeling and the top of my head and my neck hurt. I just feel generally confused and overwhelmed, especially when there's a lot of sound and movement around. If I can focus on something one on one I'm fine.

Both of my appointments (ENT and neurosurgeon) are for the 3rd. Until then, I'll continue to repeat the worry and un-worry cycle that happens with reading about these things.