My nephew's angiogram was today. Dr. said it's not really an AVM but a cavernoma (cavernous malformation). I didn't hear him say exactly where it is while he spoke with my sisters but from what I could understand, the blood vessels within the malformation are leaking thus putting pressure on the spine and causing the paraplegia. They've scheduled surgery for Friday. We are remaining optimistic but understand that the surgery may not result in a return of feeling to his legs.
I'm reading alot of discussions on this site about those with cerebral AVM but not much from anyone affected by spinal AVM or cavernoma. I'm interested to know what others have experienced.
Thanks Barbara. I'm joining, reading, researching...whatever I can to pass along to my nephew. He's sleeping alot right now while we wait for surgery on Friday. I'm so glad to see there's a site that he can reach out to with others going through this same thing.
There's also a spinal CM group @ http://www.spinalcavernoma.com/. Hope this helps!
Pls keep us posted when up to it.
All the best to you, your nephew & family,
My nephew's surgery was 6 April...successful in that the doctors got all of the CM but we are still holding out prayers that the feeling will return in his legs. He has been in TIRR (The Institute for Rehabilitation and Research) for 3 weeks now. He's doing very well with the PTs and OTs and is scheduled to be released next month. Although the doctors are telling us that he will probably be in a wheelchair for the rest of his life, we are praying the with alot of hard work and maybe a small miracle he will get some/all feeling back.
Much thanks for the update & congratulations on your nephew's succesful surgery!!!
He sounds like he's in GOOD hands. With the help of PT, OT & his youthful determination & hard work one can only hope & pray for the best outcome.