We are AVM survivors, here for your support.
A subgroup for patients (and relatives) who have been told their AVM is inoperable.
Latest Activity: Mar 2
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.
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.
I found my AVM when I was 15. It is located at the top of the brain stem near the thalamus and is about 4.6 cm long. The fact that there is nothing we can do about it worries me more than the avm itself. I'm just tired of seeing new doctors and going through all of the testing. I'm emotionally drained
Well, I have an untreatable avm. I'm glad I stumbled upon this group.Please feel free to drop me a message/read my profile/discussions. I really could use all the support I can get, Would love to hear from people with similar stories, Thank you kindly! ^.^
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Acute Disseminated Encephalomyelitis (ADEM)
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Posted by Oleblue on January 22, 2014 at 12:18pm
My name is Barbara and I've worked in the insurance industry and hospital business office for over 25 yrs. I am now retired and the wife of oleblue (Dave) who is a CCM survivor. We have shared many stories, but this one really should be more in…
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