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AVM Survivors Network

Need some advise

#1

Has anyone out there had an AVM in their Cerebellum that went from the brain stem all of the Varmus , all the way to the top of the 4th ventricle? I had it rupture in 2012 and when it happened they had thought it was possible an aneurysm and the doctors told my husband or what he wrote down for me that my body would have to heal itself and hopefully when it blew out it healed itself.

Turned out it wasn't That but an AVM and it continued to bleed into the 4th ventricle. I have others else where like in my eyes that are growing and one down low and off to the right of my spine.

My question is Has any one else been diagnosed with Dementia from your bleed or surgery ? I have cognition issues, double visions , balance issues, vertigo issues, walking , personality issues as my husband and my family says.

This has been a hard road to go down but I want to not give up on me and if I can find a way to help take some of the burden off my family to regain some kind of independents again and start remembering things, and be able to get a grip on my emotions because I go from angered so easily to sad in a drop of a hat.

I also don't know if I should get my teenagers tested. The doctors tell me not to worry because its not hereditary. They told me I had it because my biological mother did drugs when she was pregnant with me. I am so confused and scared I want to make sure they don't have to go through what I am going through. I have one that is a Senior in high school and then she will be off at college far away. The other is 16.

Thanks for listening,

Amy

#2

I had an AVM in my cerebellum that never ruptured and was removed at the end of 2006 so my sitaution is very different than yours. I can not address your concern about developing dementia but I can report that I have not developed that so far (knock wood).

Rather, I would like to address your concern about AVMs being hereditary. No the majority of AVMs are not hereditary but there is a condition that does cause AVMs that is hereditary called Hereditary Hemorrhagic Telangiectasia (HHT). From what I have read, it is characterized by nosebleeds. But you can read more about it at: http://www.sirweb.org/patients/hereditary-hemorrhagic-telanglectasia/. There are also places that test for the presence of this also if you feel your daughters need to be tested. Also, you can put "hereditary" in the search box at the top of the page to take you to all the discussions about it. Best of luck to you! :)

#3

I'm glad Suzy mentioned HHT. Reading about your multiple AVMs made me think of the same thing. AVMs are rare but multiple AVMs are even rarer and are usually not present without there being an underlying condition, like HHT. I encourage you to talk to your neurologist about it. If you are tested and found to be positive for HHT, you'll want to have your daughters tested as well. Not everyone that has multiple AVMs have HHT and not everyone that has HHT has AVMs but having it increasing the likelihood.