We are AVM survivors, here for your support.
A subgroup for patients (and relatives) who have been told their AVM is inoperable.
Latest Activity: Apr 1
Started by Marcia Frost. Last reply by kerrit Feb 9.
Started by Lisa. Last reply by LuckyLady Feb 8.
Started by JessiLynn. Last reply by JessiLynn Jan 2.
Welcome, kmatthewva! You must be very disappointed and frustrated! Does your neurologist specialize in AVMs?
I just found this group. My AVM in/adjoining the corpus callosum /splenium. I was told it was obliterated with radiation but just found out they somehow got it wrong. I acquired a lot of necrosis to healthy tissue so can't/won't have radiation again, my left side would likely be paralyzed. So now it looks like it just stays there until something happens, the doctor doesn't want to see me for two years. I can feel it in my head constantly.
Kayleigh, my brain AVM has caused my left arm to be weak, especially in my hand. I have no pincer grasp which makes it extremely hard to hold banisters and near impossible to pick up things or grasp items with. I am lucky that I am right-handed! I just had to learn to let other people do things for me, like washing breakable dishes, lifting the laundry basket and carrying it down to the laundry room, etc.
I've had this problem for many years, but I still automatically start to do things that used to be simple for me..then I drop things and get frustrated all over again! lol
Hi, I'm new to the group, and I was diagnosed with my inoperable brain AVM 18 years ago after a small stroke from a bleed. I just want to send a virtual hug out to everyone, especially those who are newly diagnosed. I understand how scary a diagnosis of an AVM can be, and my thoughts and prayers are with you.
Hi guys & gals, just wanted to give you a lil' heads up, in case you didn't know already; if you get grand mal seizures due to your "inoperable" youknowwhat, DON'T eat foods with lots of SODIOUM(salt)! they trigger those suckers like they were fireworks on the fourth of july; =/ salty food tastes hella good (like pepperoni pizza), but it's our kryptonite unfortunately, thanks to dancermom for the info, she´s helped me out more than all the doctors i´ve been to, cheers!
Welcome, Daniellaco & JaanaRamo! Yes, being told you have an AVM is certainly scarey enough...and being told that it is untreatable is terrifying! Having this group of people who understand what we are going through has been a Godsend for me.
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Acute Disseminated Encephalomyelitis (ADEM)
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Posted by John P. on March 18, 2014 at 8:00am
My craniotomy to remove my AVM was early in the first month of the year, but at first I could not walk at all and many who had the same operation I am sure had the same problem. After two months in the hospital I was able to use a…
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