My 10 year old son had an AVM rupture on 8/1/13 that has been slowly resolving. We are now in rehab for that but my question is this: has anyone ever had 2 AVMs 1 ruptured and 1 non ruptured? We are now facing the dilemma of having the new avm repaired. Our options were the cath to either coil it or glue it and then the craniotomy to remove it. Or we can get a second and third opinion to see if he would need the craniotomy. Has anyone faced this before? I thought after the bleed it would be gone and we wouldn’t have to worry about it anymore but now we have a new issue
Hi Michele. There are many members with multiple AVMs. Usually the HHT gene is involved…http://www.avmsurvivors.org/group/hht
My AVM bleed was massive and yes the AVM was still there after the bleed. I would highly recommend
getting several opinions!
It is extremely rare for an avm to "blow itself out" and disappear after a rupture. Usually, there is still an avm to be dealt with after recovery from the rupture. Use your son's rehab time to get several opinions from neurosurgeons with a wide experience in pediatric avms. I am glad your son is doing better.
Hi Michelle,
I agree with what dancermom said. I am a strong believer in getting as many opinions as you feel is necessary. The dr. who did my G.K. was referred to me by two other neurosurgeons from two different hospitals. That was Dr. Lunsford at Pittsburgh Presbyterian Hospital who did my surgery (when I had it done in 2007). I didn't even have to see him. My records and test results were sent to him and he wrote me a letter stating that I could schedule the treatment or schedule an appointment with him first, If I so choose. I should mention - The hospital was 2oo miles away and a 4 hour drive from where I live.
My point is, you may be able to just send your son's records to get a dr.s opinion and recommendations. Then you wouldn't have to make an appointment until you know who you want to see.
How is your son doing? Is the rehab helping him? How is he emotionally? Is he doing ok?
Ben