We are AVM survivors, here for your support.
Just turned 30, 2 1/2 years after a cerrabullum bleed from a AVM
I am mostly on Facebook, lol.
I am still having difficulty walking or balancing I should say.
I might be the story for the heart and stroke foundation in Kamloops BC.
I still have harsh head aches and slur when I talk.
I was diagnosed with confusion and feel things are almost getting easier to remember and grasp.
The last brain surgery I had was gamma knife and while it's working great I think I am loosing my hair again.
That kinda sux.
My emotions and fatigue have improved dramatically.
This is great.
I remember when I could only stay awake for like 20 mins at a time and I used a full time catheter.
Times have changed dramatically.
Has anyone experienced hair loss from gamma knife? And if so how long did it happen for?
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Comment by heidiH on February 17, 2012 at 9:55am -
This is very encouraging to me. I had brain surg. in May2010 for a Cav. Malformation that had to be removed emergently as I could not walk. Now I have this leg weakness that very rarely lets up. Now I have it seems like nerve pain in my legs that's excruciating. AND like you I'm tired a lot. It's nice to see that there may be light at the end of the tunnel.
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Comment by Deb C. on February 11, 2012 at 3:17pm -
Hi Monica,
Glad you are here with us at age 30 and 2 1/2 years after your AVM episode. Glad things are improving. Sorry to hear about the hair loss. I know that others have lost their hair from radiation treatments. Hope yours grows back and that you continue to improve.
Take care,
Debbie
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My story
Posted by chels925 on June 3, 2012 at 10:37am 0 Comments 0 Likes
Hello everyone. While I do not have a AVM, mine is only a VM. It is in my right cheek. I have been undergoing treatment for it since 2006. My first treatment was in September 2006. I had some complications (I got an infection and went septic). I…
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I moved on ... but I cant escape
Posted by Dansky on June 3, 2012 at 7:15am 0 Comments 0 Likes
The first rupture of my AVM brought me to total shutdown you could say. from normalcy to all of a sudden a twist of life.
I move on ... but I cant escape...
I was at work (luckily I was in office, crowded, people are present, the…
Continue Away for 5 weeks
Posted by ramona777 on June 2, 2012 at 3:51am 2 Comments 0 Likes
Hi to all my newfound friends . may not be online much in the next 5 wks but wanted to say to each and every one of you, many thanks for your welcome, friendship and support. be back soon. If anyone can advise me how to join AVM australia? Thank…
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the appioment went.......
Posted by Celina on May 31, 2012 at 8:59pm 2 Comments 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 3 Comments 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 1 Comment 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 2 Comments 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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Coffee in Rockhampton
October 11, 2011 at 6pm to October 10, 2012 at 7pm – Some where with good Coffee
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