Looking to find information on a 2nd opinion with Dr. Spetzler, Share your experience if you have one

Hi All-

It's been quite a while since I've been on this site. I've stayed updated somewhat via facebook and the group on there, although the newest group is not private- and I'm not comfortable posting where everyone on my news feed has the option to see it. Either way, here's some back story- I was diagnosed with an AVM in 2009. It is very large and "eloquent", in short a grade 5 AVM. I've had 5 emobolizations, and 2 Proton Beam Therapy treatments in Boston with Dr. Chapman. December will make 4 years since my last treatment, and sadly my latest MRI has shown very little progress with shrinkage from the radiation. In speaking with my current doctor, he recommends retreatment in Janurary of 2014, but given the size of my AVM and location he is extremely cautious (hence having Proton Beam therapy as opposed to gamma or cyber knife). He's relayed that with another treatment, I have 20% chance of it showing any progress- and I'd again have to wait 4 years for the therapy to work given the size of my AVM. At present I'm 27, I do not allow this to burden my daily life- I continue to play soccer and live as I did prior to finding out about the AVM care of a seizure. I guess my main question is- I want a second opinion and I feel as if given the nature of my AVM- that I should really focus on presenting my case to someone who is best equipped to handle it. Any insight into whether you've done this yourself, or have been seen by Dr. Spetzler would be greatly appreciated. The thought of continuing down this road for another 4-8 years of the waiting game, hoping my time bomb doesn't explode is frustrating- especially with the thoughts of hoping to have children at some point. Thanks in advance!--


Dandelionwishes has an amazing story I think you'd appreciate re: Dr. Spetzler. :)
Best wishes.

You are picking the right person.