If you live in the New England area, Dr. Cristopher Ogilvy and his team at Beth Israel Hospital (Boston, MA) are amazing. They certainly made me an AVM Survivor!
I can’t wait to meet Dr. Christopher Ogilivy and his team for my 2nd opinion Louisa! December 8th won’t come soon enough my friend :)))!
I just got accepted as a patient last week! I can’t wait to meet with him. Thank you so much!
do you have a cerebral avm?? we live in western mass and really are having a hard time with anyone who can help. they always say "that is huge", but say there is nothing they can do. my husband just lays in bed on pain meds for weeks and months on end......he cannot alleviate the pain even w/fentanyl patches and oxc's. he just wants to die from the pain. any suggestions???
secrockett, my AVM was on my left temporal lobe. The best doctors in our area are in Boston...Have you been to any of them yet? I totally believe in second, third and fourth opinions. If you need any further information, please reply back to me.
In Boston, I swear by the staff at Brigham and Women's hospital. I was under the care of Dr. Ebon Alexander, in neuro-surgery. But, I'm in Virginia, now, and I don't know if he's even there, still.
We were treated by PBR at Mass General in 1992 by a Dr. Kjellberg, who was one of the pioneers in using PBR to treat AVMs. He spent a lot of time overseas, conducting testing on animals to see how to perfect PBR. He seemed like a nice man, and looked like Santa Claus with his beard. We received a short cryptic letter several months after treatment, saying Dr K would not be able to keep us as patients (no explanation).
With such a unique name, and the internet coming online, I searched the Boston papers and found Dr. K's obit! He died from cancer, and although I initially wondered about radiation exposure, I was enlightened by a young Dr who had worked with him--Dr. K chain smoked, which is what I suspect got him.
The DR that emerged as MGH's AVM guru following Dr. K was none other that Dr. Ogilivy. I have not met, nor spoken with him.
One of the first peer to peer support groups online was coordinated by Dr (sorry, forgot his name)at MGH. When it first started, it was pretty state of the art. I was a mod with them and it had several hundred following online. It was cumbersome by standards of this website.
When Ben's site began, the volume on the MGH dried up. They were supportive of posting Ben's links at their site. IIRC, they shut it down about a year after Ben's came online.
At the time, MGH was the ONLY place to go for things like we all come here for now.
Glad you told us about your MGH story, Ron...I always wondered why your wife didn't continue with her PBR. AND Ben did tell me how our Network took over from the MGH's Group. Thanks for sharing.
I'm with you... Mass General
made me an AVM survivor as well!
Are you still on these forums? I was hoping to talk to you about your left temporal lobe avm. I too have one and would like to talk to someone who has a simile one and lives in mass or had a Mass doctor work on it.
I hope this reaches you. Please reach out.
Thanks a bunch.