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AVM Survivors Network

Anyone out there that has NOT had a bleed or issues from their AVM?


#81

Where is the avm located? I had bad results with treatment but I need to say that does not affect my answer. I think you should get it treated. Basically my treatment was a fail. I am currently finding this out now. Yet nearly everyone else who gets treated is fine. I am the only one I know so far that had no change. I had raido surgery. I think they missed it. I was told I should not have kids. My avm is small yet they said having kids could cause a issue. No bleeds ever yet. So my future is unknown…


#82

Hi Tina,

I was diagnosed 2012 with right frontal lobe AVM (4cm)which was embolized in the November and then Gamma Knife in the March of 2013. I got the obliterated result last year. Mine was found incidentally though a routine hearing test. Keep fighting!
Alex


split this topic #84

A post was split to a new topic: Hi, I’m Brody


#85

I was diagnosed in 2015 pretty much accidentally like you and I have not had anything done. I will say that I did experience discomfort and loud heartbeat in my ear for several months until it was diagnosed and then I believe that once I got the diagnosis I started to calm down and blood pressure came down and heartbeat in ear went away. I am torn to as to how to proceed even though it is a few years later. I just feel like I was left hanging. Have you gone for another opinion and to get other thoughts from another doctor? That is what I am looking to do. Nerves and stress can cause a lot of issues. It is comforting to know that this network of compassionate friends is available. Thank you for sharing Jamie and God bless you as well and all those who are suffering. Sue