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Radio Show For My AVM Friends and Family

As some of you may know, we are having our annual AVM bbq today in Texas. Our good friend Daniel Sadler, our host for the bbq asked me to p…

Started by James Larken SmithLatest Reply

AVM Guide For Patients & Their Families - Question #5

AVMSurvivors.org is in the process of preparing a guide for individuals that have been diagnosed with an AVM. The purpose of the approximat…

Started by James Larken SmithLatest Reply


Moderator

"The AVM Survivors Network Memorial Forum"

"This is a Memorial Forum to remember our fellow AVM members who came here for support, and gave support." "As they will always be in our…

Started by WilliamLatest Reply

Discussions Replies Latest Activity

Moderator

AVM Guide for Patients and their Families - Question #6

AVMSurvivors.org is in the process of preparing a guide for individuals that have been diagnosed with an AVM. The purpose of the approximat…

Started by Suzy E

14 1 hour ago
Reply by Daniella

Had my first seizure this weekend

Had my first seizure this weekend - 4 months after my Gamma Knife. Let me tell you, it will really put things into perspective for ya. I wa…

Started by Zilly74

20 4 hours ago
Reply by toyaoboya

medical malpractice

Get this!My mom just got my old medical records, and in them they knew I had the avm. It was found in a mri scan when I was 17. They sent m…

Started by Melissa Reynolds

23 6 hours ago
Reply by Melissa Reynolds

Cavernoma in brainstem

Hi All My sister suffered from sudden double vision a month ago and the MRI showed that there was some bleeding in her brain. We went to se…

Started by Jenny

13 6 hours ago
Reply by Patti G

Stress to heart

I am new to this site and have never added or even participated in a discussion but I figured I would try. So here goes....I am a 26 year o…

Started by Elizabeth H

3 8 hours ago
Reply by Elizabeth H

Pulmonary AVM

My mom was just diagnosed with a pulmonary AVM. She was told by pulmonologist in Hartford, CT that it needs to be coiled as soon as possibl…

Started by Stephanie

1 8 hours ago
Reply by Barbara H.

HHT questions

Evertbody, My daughter's bleed/emergency crani occurred in 2009. My other two older children haven't had any health issues -- until recent…

Started by Tina White

0 21 hours ago

Angiograms - did you get wild hallucinations during the procedure?

Did you have any visual disturbances when the dye was injected? I did. I was treated to the best light show I ever could have imagined! (I…

Started by Neil

10 yesterday
Reply by Michele_A

Radio Show For My AVM Friends and Family

As some of you may know, we are having our annual AVM bbq today in Texas. Our good friend Daniel Sadler, our host for the bbq asked me to p…

Started by James Larken Smith

1 yesterday
Reply by Patti G

Any experience with stopping anti-seizure meds?

Nea has decided to stop taking Keppra... the depression and other side affects are the reason. Has anyone here had experience with ending s…

Started by Nea's Mom

9 yesterday
Reply by Rob Forsythe

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Blog Posts

Counting Down The Days...

Posted by Sam on May 27, 2012 at 3:30pm 0 Comments

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…

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What up with my ear???

Posted by kristi on May 26, 2012 at 3:17pm 3 Comments

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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MRI or angio?

Posted by stephanie on May 26, 2012 at 1:24pm 4 Comments

Click here to visit my latest blog post. If anyone could shed some light on the conclusiveness of MRI and angio, it would be great! The surgeon…

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Stage one complete

Posted by existentialmom on May 25, 2012 at 4:48pm 2 Comments

Merlin came through the first gamma knife well, and we are scheduling stage 2 in August. Her treatment time was 152 minutes! No side effects yet.

We are relieved, but holding our breath against the next 3 months, 6 months, 1 year, 3 years,…

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Thank you

Posted by Cat D on May 25, 2012 at 3:14pm 2 Comments

I only got accepted to this site yesterday and already I feel at home. I hope that this will be good for me and my mom who also was accepted yesterday. We both have been through a lot in the…

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May 2012 AVMSurvivors Community Newsletter

Posted by Ben Munoz on May 25, 2012 at 9:14am 0 Comments

Dear Friends and Family of AVMSurvivors,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient…

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10 days post surgery for my brother

Posted by DsSis on May 25, 2012 at 12:37am 5 Comments

David's surgery was May 14th and today, May 24th, we had a series of wonderful things happen.

1) I finally got to see my brother walk (with the assistance of his wonderful physio) - he made two rounds of the hospital ward...I was the last…

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"Executive Function Disorder"

Posted by Hiro on May 23, 2012 at 8:50pm 10 Comments

I had the neurologist appointment on Monday, and he diagnosed me with "Executive Dysfunction Syndrome" that he thinks stemmed from some sort of damage to my left frontal lobe during/after my surgery (that was where my 3 AVMs were), contributing…

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