Just wanted to share this for anyone that is in a similar situation. I have an AVM in the pons area of my brainstem. I'm sure as a lot of you have heard, it's been untreatable because of the area.
I've been seeing a doctor at NYU for quite a bit of time, and it appears that there have been some advances in technology with the Gamma Knife. I was told that my chances of being "disabled" due to gamma knife treatment was somewhere between 10-20% with pretty much a 100% cure rate.
Being that all of us know of the 2-4% cumulative risk that we face every year, I think those are much better odds.
I'm still thinking about my decision, but wanted to throw it out to the community to give some hope.
I'll be going to 2nd,3rd, 4th opinions soon.
Thanks to everyone for sharing their stories. All this stuff makes a difference.
I was diagnosed cavernous angiomas in the medulla area of my brainstem and had two "traditional" brain surgeries. I wanted to do Gamma Knife but it is too risky for angiomas. After my 2nd surgey, last May, my neurosurgeon sent the removed angiomas (there was some left that was not removed the first time apparently) to biopsy. He then told me that they were actually AVM's. My life would be completely different if all of the experts whom I have seen had diagnosed it correctly...
Anyway, 14 years ago I wastold there are doctors in Chicago area who trained in Switzerland with the Gamma Knife creators. Something to look into.
Good luck, it defintely sounds like a good option!!
Hi Eric, I ran a search for brainstem AVM's & found these discussions @ http://www.avmsurvivors.org/forum/topic/search?q=Brainstem+AVM.
Getting 2nd, 3rd, etc. opinions w/ leading AVM experts is always a good option, or until you are comfortable w/ the direction of care.
Sounds like you're doing your 'homework' in researching your options, and that's important to. :)
Best wishes.