We are AVM survivors, here for your support.
Great Idea
I was lucky, I was diagnosed with an inoperable AVM at 20 and continued almost twenty five years with no problems. But then I was hit with a stroke. I feel lucky I was ten minutes from Mass Gen'l Hosp. and some of the best talent in the world,
However, recovering from the stroke is one thing, the AVM still existing is another. Although the doctors knocked out 50% of the AVM with an onyx embolization, 50% of it still exists.
I am lucky that I don't have any immobilization of my limbs but I did suffer from paralysis to the right side of my face. I had cross-graft nerve surgery, with the muscle attachment to take place in April, followed by therapy. It's a long road and I am trying to substitute teaching while I recover.
I would very much like to hear other stories.
Tags: Albert, Carter, Dr., Oglivy, Yoo
Replies to This Discussion
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Permalink Reply by Judy A. Costa on -
I was diagnosed with a spinal AVM some thirty years ago. It did not bother me untill about two years ago.
I lost some mobility and found it very difficult to get out of a chair. I have had two embolizations done and I still have mobility problems. I also have problems with my bladder. I am use to being very active and find it most difficult not to be able to do the things I would like to,including much work in the kitchen. I am a retired school teacher. My AVM's are inoperable and I am afraid to have anything else done. I went to New York for my procedures and live in Connecticut -
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the appioment went.......
Posted by Celina on May 31, 2012 at 8:59pm 1 Comment 0 Likes
it went good he wants to do a big test on me he has to open the top of my leg then put a tiny cam up my leg into my head i will be put to sleep for it he wants to look at it.
Starting to understand everything...
Posted by Hannahpoppe on May 30, 2012 at 12:45am 1 Comment 0 Likes
Hi everyone!
I'm a new member here...
I got diagnosed with AVM this fall. After having really bad headaches for a long time, I decided to visit the doctor. She made the descision to send me on an x-ray and then they saw a 2cm AVM om…
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Of Seizures
Posted by Jaime G. on May 29, 2012 at 7:32am 0 Comments 0 Likes
I'm being treated for Temporal seizures; simple and complex, aware and absence. The 1st one(went undiagnosed)happened almost 5mos post embolization/craniotomy. In Novemember simple happened 1 or so bi-weekly. This Jan I went inpt for longterm…
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Facebook Feature Supports Organ Donation
Posted by Armando A. on May 28, 2012 at 8:02pm 0 Comments 0 Likes
We never realize the value of organ donation, until we're on the receiving end.…
NUMBNESS
Posted by josh54 on May 28, 2012 at 12:20pm 1 Comment 0 Likes
My AVM was near my right lateral ventricle. It ruptured (very painful) and I had a crainiatomy. After the surgery there were difficulties and I was in a ten day coma. When I awoke the AVM was removed successfully but as a result I have numbness,…
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feelin a bit frustrated but hopeful
Posted by Patrice on May 28, 2012 at 5:13am 0 Comments 0 Likes
Counting Down The Days...
Posted by Sam on May 27, 2012 at 3:30pm 2 Comments 0 Likes
I'm counting down the days!!! At the end of June 2012 i have to go to the hospital for another Angio.
Hope to hear good news, that the Embolization and 2 Gamma Knife treatments where succesfull and that after 7 years of fighting the AVM is…
What up with my ear???
Posted by kristi on May 26, 2012 at 3:17pm 3 Comments 0 Likes
I had a bruit when I had the AVM. It was there all my life. I guess everyone hears it at some point but as an "AVMer" mine was ALWAYS present. We became friends:)
My bruit was my connection to my heart, so I always thought (when I never…
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