We are AVM survivors, here for your support.
A subgroup for patients (and relatives) who have been told their AVM is inoperable.
Latest Activity: Sep 18
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.
Hi all. My AVM is inoperable and I am having my second high dose radiation treatment soon. Going through preliminary tests ie. CT, MRA, and mapping CT. Location is near the hypothalamus I think. 4 on the Spetzler-Martin scale. No gamma knife, they are using the Linac machine. Anyone else being treated with this machine? Thanks in advance.
hi,i have a 16 year old daughter with a complex AVM in pelvis,thigh,labia and buttocks,just wanted to know if anyone else has similar and can offer advice on the pain?
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!
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Posted by Svetlana on September 10, 2014 at 2:49am
It's now 2 weeks after the 3rd trip to Arkansas that was the most successful. Dr Richter did lasers and bleomycin injections (he chose bleomycin again because it showed better result than doxycycline), it worked very well, with no complications,…
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