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Inoperable AVMs

A subgroup for patients (and relatives) who have been told their AVM is inoperable.

Members: 218
Latest Activity: yesterday

Discussion Forum

Inoperable AVMS

Started by Marcia Frost. Last reply by kerrit Feb 9. 19 Replies

Where is everyone?

Started by Lisa. Last reply by LuckyLady Feb 8. 7 Replies

Syncope associated with AVM?

Started by JessiLynn. Last reply by JessiLynn Jan 2. 4 Replies

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Comment by so sweet 70 yesterday

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.

Comment by Redhairedwench on June 18, 2014 at 8:56am

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?

Comment by Connie T on April 1, 2014 at 9:46am

Welcome, kmatthewva! You must be very disappointed and frustrated! Does your neurologist specialize in AVMs?

Comment by kmatthewva on March 20, 2014 at 4:54pm

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.

Comment by Connie T on February 24, 2014 at 11:15am

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

Comment by Lianne on February 22, 2014 at 12:13pm
Kayleigh.. .my left arm goes numb and i get an incredible pain that shoots through my pinky finger bringing me to tears..
Comment by Jamie on February 16, 2014 at 8:39pm
My mother has had an avm/davf for 2.5 years. It is between the size of a baseball/softball and sits at the base of the brain equally overlapping on both hemispheres. She had an embolization, shunt, gamma knife. She for sure had a small stroke and a seizure. The seizure was back in November. It was so bad that she was on life support for two and a half days and suffered bad short term memory loss and cognitive deficits. A month ago she had another episode, the hospital insists it was due to a urinary tract infection and not seizure related. The infection was tiny at best, so I am not sure what to believe. She has problems now with depression... But she also has moments where she gets way upset. Inconsolable. And today during one of those moments, she told us she believes she had 4 hospitalizations and not 2 over seizure/seizure like issues. My father, her friend and I all told her it was only twice. But now she is conflicted over what is true... What is told to her or what her brain tells her. We have no clue what we should expect about this disorder. Plus, I was born with lots of problems too which are coming to a head. My life is in its Winter. I want to help her while I can. I am well versed in the body but not in the brain. I am, however, a fast learner. Help in any form is wanted! My mom is 63. She had a sinus infection that wouldn't go away so the doc sent her for a catscan. Thus it all started. Thanks.
Comment by LuckyLady on February 8, 2014 at 11:33pm

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.

Comment by Kayleigh O'Connell on February 7, 2014 at 11:25pm
Has anyone here got an that effects their entire arm as I don't know what to do anymore... Just need some advice on how to cope with it really
Comment by monztrrr on July 15, 2013 at 2:15pm

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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Results of 3rd procedure

Posted by Svetlana on September 10, 2014 at 2:49am 3 Comments

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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