Hey guys, I was recently diagnosed with a cerebral AVM in my left frontal lobe. I got my angiogram and functional MRI done at Stanford, and now I'm looking for second opinions. Basically, I'm looking for long distance (just send DVD's of my records, talk on the phone) second opinions from the *best* doctors in the country. I see that Johns Hopkins has exactly what I'm looking for, and I was wondering who else might. I figure that if it's only $250, I might as well get a second and third opinion.
Drs. Dodd and Steinberg at Stanford agreed that I should pursue embolization and Cyberknife, but nothing invasive since the AVM is right where my motor movement is controlled. I need to follow up with them for more details, but that's where it stands right now. I'm going to speak with Dr. Lawton at UCSF and considering Dr. Martin and UCLA.
Others were kind enough to post the US News top neurosurgeons list, but it's a little too broad. I basically want a list of only the very, very best docs and ones that will offer a second opinion without having me travel.
Any help is greatly appreciated, thanks!
P.S. I'm new to this site, so please let me know if this kind of question should be posted elsewhere. Thanks again.
Hi. My AVM is over my left pre-motor and motor cortex as well. I have sent my records for review to three locations that I am waiting for answers from before deciding where I will go for treatment. I sent records to Dr. Spetzler. The cost for review is $100.00 money order to him. The phone number listed above is correct and they were very nice to work with. It took less than 48 hours for him to review and get back to me. I am also waiting for UCLA to call me back after Dr. Martin finishes his review. They did not charge me anything. They were the only ones that wanted records for my kidney surgeries as well as all of my neuro imaging, reports, and clinical notes. UT Southwestern in Dallas is the last place I sent for review. I received a call today saying Dr. Samson will review them and I will hear back from them soon. No charge for review and they gave me a Fed-Ex number to use to send them all of my "stuff". His office staff was very nice and prompt with return calls. So it's just more waiting for now. I would like to suggest Dr. Olgilvy at Mass. General- top notch. I don't know if I spelled his name correctly. Best of luck and lots of relaxation for you ~Elizabeth