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AVM Survivors Network

Who out there has had a brain AVM rupture particularly in the cerebellum area and lives in Miami, FL?

In other words I am looking for people like me! My AVM decided to rupture after my second embolization in May 2009. I subsequently had an emergency craniotomy and was in intensive care for roughly 30 days. The left part of my cerebellum was completely removed together with the AVM at the time of my craniotomy. I would love to get to know other folks who have experienced something similar so we can basically compare notes and support each other.

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my avm in cerebellum ruptured after the second embolization. part of my cerebellum was removed during craniotomy. that was in nov. 2005. i have weakness on my left side, use a walker or cane. i don't work outside of the home. just started driving, again. i sometimes wonder if i didn't have the embolozation, if i would have had the rupture.

Hi Karen,

I just read your reply and a similar thing happened to me. Did you end up with a vp shunt? Who did your embo and craniotomy? I would love to meet. It is hard too find someone or some folks like 'us'. I have found all sorts of support groups but I think this is the only one for people like us and we seem to be pretty much spread all over the place so there is no real face to face. You are the first person that has had an avm rupture similar to mine and has probably experienced what I have had to go through and maybe we can help each other deal with our situation and support each other.

karen schumacher said:

my avm in cerebellum ruptured after the second embolization. part of my cerebellum was removed during craniotomy. that was in nov. 2005. i have weakness on my left side, use a walker or cane. i don't work outside of the home. just started driving, again. i sometimes wonder if i didn't have the embolozation, if i would have had the rupture.

i had my surgery in philadelphia. you are in florida? are you disabled as a result of the rupture? i lead a totally different life now.

yeah I am disabled as a result of rupture.

karen schumacher said:

i had my surgery in philadelphia. you are in florida? are you disabled as a result of the rupture? i lead a totally different life now.

I have a son a brain AVM ruptured in December 2011 in Africa leaving since 2014 in Tampa, Florida disabled as a result of the AVM rupture. He had the AVM rupture at the age of 12 now he is 19 years old.