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Old 10-22-2005, 07:30 AM   #2
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Re: AVF/AVF in Spine - does anyone here have this?

have they confirmed it is indeed an avm?this is what they originally thought i had inside my spinal cord but after I had an angio done and it didn't lite up,it was found to be a cavernous hemangioma.i still have part of it that was left behind after they hit and lost the nerve that went to my feet during the surgery to try and remove it.they had to immediately stop my surgery.who have you seen so far to actually discuss this and what to possibly do about it?these can be nasty little SOBs depending on just where they decide to show up.There are some threads regarding these that are located in the brain forum and the spinal cord forums on these boards.If you just go to those sites and do a search by using AVM you will find quite a few posts about people who have them.honestly,the best things you can do for yourself is what you are already doing,RESEARCH.And getting more than just one opinion on possible options for surgery.unfortunetly,depending on just where these are located in the spinal cord or brain they may not be able to even be safely removed.mine was in a spot that was not considered a "good' candidate for removal but i was having bleeds which were causing me more pain and neuro issues so I really did not have much of any real choice here.unfortunetly for me, my cavernoma ws located close to the cord wall(which is good) but the nerves that went to my legs and the fine motor to my hands ran right between the cav and the wall.i went into surgery knowing for sure i was going to have some sort of loss at least in those areas and probably more,my NS just could not tell me what or how bad.i did have alot of secondary damage with alot of crap that came along with it.but at least I don't have to worry about a sudden bleed causing me instant paralysis,which would have happened when it bled one more time if i had not gotten it out when I did.but I also know someone who had one in close to the same area as mine who also had there surgery about two weeks before mine,and his went without a hitch and he was back at work as a gum coach only six weeks post op.sooo,who knows.

just research and find all you can about what it is you are actually dealing with and possible options as far as any sort of treatments.unfortunetly surgical resection is probably the only "real" sort of will all depend like i said,justwhere yours is located and the nerve structures that are inthe immediate area.if you have any questions please ask,K? i wish you luck chris.Marcia
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.