I am an AVM survivor from NM & I am involved in a Los Alamos National Laboratory research project with AVM’S & the Gamma knife procedure. I an looking for other survivors who are wanting to be involved in this research or all want to start a local AVM survivor club of some sort.
Wish I lived closer, but want to know all about it your journey!
I live in NM and have a spinal cord AVM (and an aneurysm). But I've been told I'm not a candidate for GK - mostly due to them being intramedullary - in the middle of the cord, and also because they're too far down the spinal column - C-7 to T-2. They would have no way to stabilize the treatment area like they do when they use the halo.
If it weren't for that I would love the possible opportunity to participate in such research.
I have my treatment and testing done at the Barrow too.
I'm interested to know more about the LANL AVM research project you're in involved in, even if I can't participate - can you provide us with a link, or something else?
Are you participating in the project as a patient?
It would be great if you could keep us posted about how it's going and what it's like. Good luck with this.
There are 13 members total in NM. If you go to the members page, then advanced search, put “nm” (without the quotes), you will see the member usernames, and sometimes the city they are in.
If you comment to any of them, it should show up in whatever email account they listed when they signed on.
Can you share with us what the goals or status of the research project is please?
Hope this helps.