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If your family has been affected by AVM, consider AVM Survivors Network your second home.

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All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

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Videos

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Featured Discussions

radiotherapy nervousness

Hi there, i finally agreed to get radio surgery done. After reading the risks, i am super nervous and would love to hear peoples experiences :)

 

What is Arteriovenous Malformations (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. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body.

Forum

Faith...or the lack thereof

Started by mymomhasafauxhawk in Emotional Support. Last reply by mymomhasafauxhawk 16 minutes ago. 13 Replies

I am taking a big risk by putting this out here, but I need an outlet and this seems as good a place as any. One of the hardest parts about this whole diagnosis has been my struggle with the notion of death...not the fact that we all die, but the…Continue

Persistent headache

Started by Dee in General 29 minutes ago. 0 Replies

Hi, I had my AVM surgery last summer and also have an untreated aneurysm. Since around December, I've been experiencing a very specific type of headache. It's above my left eyebrow. It's always the same spot. Always. They are not severe necessarily…Continue

feeling lost in a world that I never thought I would find myself in

Started by darrenfrowley in General. Last reply by Nea's Mom 34 minutes ago. 32 Replies

Hi all,Been on this site for a while now ...since July last year when I had my 2 nocturnal grand mal seizures and discovery of a right frontal lobe AVM.so I dont even know where to start really!! suppose from when my life changed would be a…Continue

left limb weakness

Started by omair alam in General. Last reply by john gagliano, jr 49 minutes ago. 3 Replies

hello everyone, i had an cerebral AVM burst in 2011, by which i was send to coma later on i found to be safe, but i was parallized for 6 months and recover gradually, but still my left leg is feeling like tingle, can any one tell me when my leg will…Continue

Ben's Friends Member Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

Mobile App and E-Book Available for Download!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

AVM Guide For Patients & Their Families

AVMSurvivors.org is in the process of preparing a guide for individuals that have been diagnosed with an AVM. The purpose of the approximate 20 page guide is to provide hope for a vibrant future, information about treatments, life expectations, and help for family members encouraging an AVM survivor. Read More...

Latest Activity

mymomhasafauxhawk replied to mymomhasafauxhawk's discussion Faith...or the lack thereof
"This post has touched me, Thank you so much for sharing and helping me come start to come to terms…"
16 minutes ago
mymomhasafauxhawk posted a blog post

Initial Surgical Consult update

Feel a little better. The surgeon and staff are super nice and really seem to have their act…See More
20 minutes ago
Dee posted a discussion

Persistent headache

Hi, I had my AVM surgery last summer and also have an untreated aneurysm. Since around December,…See More
29 minutes ago
Nea's Mom replied to darrenfrowley's discussion feeling lost in a world that I never thought I would find myself in
"Darren, your doctor's response that all anti seizure meds have these symptoms may be correct…"
34 minutes ago
john gagliano, jr replied to omair alam's discussion left limb weakness
"no magic cures and have to accept that you may never go back to where you were before.I'm 7…"
50 minutes ago
john gagliano, jr replied to omair alam's discussion left limb weakness
52 minutes ago
john gagliano, jr replied to momof3blt's discussion Who Am I ?
"I'd talk to a psychiatrist/psychologist first. Need to accept that life is forever changed. I…"
54 minutes ago
Michele Brazelton replied to momof3blt's discussion Who Am I ?
"Okso I have to ask because this is eerie. You have both VWD and an AVM? So I am probly the closest…"
58 minutes ago
momof3blt and Louisa are now friends
1 hour ago

Moderator
dancermom replied to omair alam's discussion left limb weakness
"Omair, many members have had one-sided weakness after a bleed and vision damage, too. I don't…"
1 hour ago

Moderator
dancermom replied to Leeka's discussion How to Deal with Resistant Doctors
"Time for a lawyer, Leeka, in my opinion. You cannot let your health be held hostage to a doc who…"
1 hour ago

Moderator
Barbara H. replied to Leeka's discussion How to Deal with Resistant Doctors
"I am speechless and that never happens. However, I would not want somone operating on my brain that…"
1 hour ago

Most Popular Content 

1 Worried sick

Worried sick

Posted by VioletMaltese on April 10, 2014

2 feeling lost in a world that I never thought I would find myself in

feeling lost in a world that I never thought I would find myself in

Posted by darrenfrowley on April 13, 2014

3 Faith...or the lack thereof

Faith...or the lack thereof

Posted by mymomhasafauxhawk on April 13, 2014

4 Who Am I ?

Who Am I ?

Posted by momof3blt on April 15, 2014

5 New group for our divorced and separated members

New group for our divorced and separated members

Posted by dancermom on April 15, 2014

Blog.BensFriends.org

Jaz’s video on FB from the International Symposium on Head...



Jaz’s video on FB from the International Symposium on Head and Neck Malformation. We’re so proud of our AVMSurvivors.org members! 

Great work Jaz!

 
 
 

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Photos

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Blog Posts

Walking Again

Posted by John P. on March 18, 2014 at 8:00am 2 Comments

My craniotomy to remove my AVM was early in the first month of the year, but at first I could not walk at all and

many who had the same operation I am sure had the same

problem. After two months in the hospital I was able to

use a…

Continue

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