Can't remove all of AVM?

I've read a lot of stories on here, and I haven't seen anyone that has said their doctors told them they could not remove all of the AVM.

I had my stroke in 1999 with gamma knife two months later and also again in 2006. I had MRIs following and an angiogram in 2009 where they said the AVM was not gone, but doing another gamma knife was more risk than it was worth.

I was supposed to have some 3 hour long MRI (for me they are normally an hour) where they would obsrve what parts of my brain controlled parts of my brain by stimulating certain parts during the MRI (well at least I think that's how it was supposed to go. I don't know because I never had it done)

Since nobody else has said that they still have an AVM but were told no more treatment was possible I'm a little worried. Should I be worried that part of the AVM is still there?

Is there anyone else out there that still has part of their AVM and was just told to live with it?

Morgan, as I’m sure u have read, not all avm’s are able to obliterated and some not able to treated at all… However, know that avm’s are not a new a diagnosis. They have been around since long before u or I were ever born and most people back then didn’t even know about their avm’s till the end of their lives. Usually later in life, 70’s or 80’s I might add.:slight_smile: It’s interesting to read here when people say “I ‘got’ my in avm in…2005 etc.”, when in all actuality we are born with our avms. U are not alone, technology improves everyday. Enjoy ur life the best u can, and don’t let what’s left of ur avm stop u from realizing ur goals in life. Important thing to remember is that u are not alone with ur avm, survivors here understand ur situation and millions of others undiagnosed or who have yet to find this site are with u as well! Hang in the there, man, keep us posted. -GK

Morgan: there is a sub group in here for inoperable avm you may want to visit

Hanne xxx

Have you had a 2nd and maybe a 3rd opinions yet? I had one of the 3 hour AVMs and it wan’t all that bad. I didn’t like the small space and almost fell asleep during it. A few times which made it go longer. I think it is called a functional MRI. I have become an avid reader of the Journal of Neurology. It can be a bore, but they really do come out with new treatments all the time. They aren’t all related to AVMs, but it shows that they are progressing and are finding that some treatments that were tried to fix something else may have the ability to help us. I have an embo (12-09) and a crainiotomy (1-10). I lucky as that was the route of my treatment. It must be torture to have to wait months or years to see if it helped. I wish you luck and send you good vibes and healing thoughts. Try to get more opinions and maybe read the Journal and if you see a new treatment and bring it up to your doctors.

The Doctors told me my Daughter’s AVM is very large {in the cerebellum next to the brain stem. She is due for an angio the 2nd to #rd week of this month. I will keep you posted to the outcome. They have mentioned a few ways the MAY be able to deal with it…radiation, clamp it off, or “glue” it…they say all have extreme risks.