AVM Survivors Network: AVM Support Group

We're AVM Survivors, Here For Your Support...

If you or a loved one has had an AVM, this AVM support group is for you. We are the AVM Survivors Network, here for your support.

Events

Rest In Peace Baby Nathan

January 11, 2009, despite a courageous fight against his AVM, Baby Nathan lost his battle.

Family and friends celebrated his life as he was laid to rest January 17th at Oak Hill Funeral Home & Memorial Park in San Jose, CA.

About "Add As Friend"

The software we use for our community includes an "Add as Friend" feature which can't be disabled. Feel free to use it or not, no worries. Either way, we're all friends here.
 

What's an AVM?

Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. They are comprised of snarled tangles of arteries and veins. AVMs of the brain or spinal cord (neurological AVMs) are believed to affect approximately 300,000 Americans. (read more...)

Latest Activity

JOHN.ROBERTSON left a comment for Janine39 minutes ago
Precious Ochoa and Judy Brandl are now friends42 minutes ago
JOHN.ROBERTSON left a comment for Steve45 minutes ago
Leeanne Newby left a comment for Joy59 minutes ago
Joy left a comment for Leeanne Newby2 hours ago
Bonnie Kanaski (McKenzie's mom) and Audree Flynn are now friends5 hours ago
Leeanne Newby updated their profile6 hours ago
Leeanne Newby left a comment for Alicia7 hours ago
Audree Flynn left a comment for Alicia9 hours ago
Audree Flynn updated their profile10 hours ago
Alicia left a comment for Audree Flynn10 hours ago
Audree Flynn left a comment for Alicia10 hours ago
Loz added a blog post10 hours ago
Wow, hasn't this site grown. I haven't been on her for a while. I'm now about 15 months since my bleed and about 7 months since gamma knife treatment. I'm slowly plodding on with life. I do it all at my own pace these days. I haven't really had an...
Audree Flynn added a blog post11 hours ago
“You can hold yourself back from the suffering of the world; this is something you are free to do, and is in accord with your nature. But perhaps it is precisely this holding back that is the only suffering you might be able to avoid.” -Franz Kaf...
Alicia left a comment for Marie Hudson12 hours ago

New to AVMSurvivors.org?

Welcome. We're glad you found us! Some things you can do on AVMSurvivors.org:

1. Share your story with the community.
2. Ask a question in the forums. If you're newly diagnosed, don't be shy about reaching out.
3. Keep everyone updated via your personal blog.

If you have any suggestions on how to make this community even better, we'd love to hear.

*Keep in mind this is a support group of patients for patients (and friends and family). Unless a person states otherwise, we are not doctors.


Forum

Trish A.

Surgery or Wait and See 9 Replies

Started by Trish A. in General. Last reply by Leeanne Newby 22 hours ago.

kevin matthews

MRI with or without contrast? 4 Replies

Started by kevin matthews in General. Last reply by kevin matthews Jul 3.

Blog Posts

Loz

5th July 2009

Wow, hasn't this site grown. I haven't been on her for a while. I'm now about 15 months since my bleed and about 7 months since gamma knife treatment. I'm slowly plodding on with life. I do it all at my own pace these days. I haven't really had any problems at all with side effects from my treatment. Just a headache on and off (I had that before treatment), still have the hallucinations (Usually I just live with them. Occasionally they get me down a bit), still have low energy, but definitely im… Continue

Posted by Loz on July 5, 2009 at 3:25am

Audree Flynn

Why I Write

“You can hold yourself back from the suffering of the world; this is something you are free to do, and is in accord with your nature. But perhaps it is precisely this holding back that is the only suffering you might be able to avoid.”

-Franz Kafka


Whenever I go to a bookstore I’m always struck by the size of the self-help section; obviously, those books hold someone else’s notion of what that hyphenation means. But truth be told, I don’t take very good care of myself—when I write, I often fo… Continue

Posted by Audree Flynn on July 5, 2009 at 2:46am

Clare and Jacob

Embo done, craniotomy here we come.

After one cancellation and a few lies from our neurosurgeon to the radiologist(so that he would do the embo now and not make us wait longer than we already have) Jacob finally had an angiogram and embolization on 1/7/09. The results at first glance seem positive and a part that was thought to be AVM may only be malformed but not true AVM as it has no nidus and takes blood away from the brain.
We are booked for a craniotomy on 10/7/09 where Jacob's temporal lobe will be removed, we have been told… Continue

Posted by Clare and Jacob on July 4, 2009 at 2:37pm — 2 Comments

Mike McCann

One week post Angio

Hello to all. I log on infrequently, so I hope no one thinks that I do not care, it is just this trying to make everything normal and take on more at work so I do not fall in my "rankings." I had my angiogram last Friday and things look good. The doctor performing the angio was kind of weird. He asked me questions multiple times. I do not know if he was testing me or if he was the one with the brain issue. It is kind of funny now looking back and I am glad he was only in the other room looking a… Continue

Posted by Mike McCann on July 4, 2009 at 2:35pm — 1 Comment

Connie T

Question about CT angiogram

I've been waiting to go for my cerebral angiogram, but the radiologist that my neurologist wanted me to go to still hasn't come to an agreement with my insurance company, so my neurologist is sending me for a CT angiogram in the meantime. Has anyone else had one? Can anyone tell me what to expect?

Posted by Connie T on July 3, 2009 at 10:16pm

 
 

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