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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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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.


A dream so real...

Started by Melissa Joyce Lott Conner in General. Last reply by harley 53 minutes ago. 9 Replies

Has anyone that has seizures, ever had a dream that they were having one, that when they woke up they didn't know if it happened or not? Saturday night I had a dream that I was having one. I knew my husband was in bed next to me so I was trying to…Continue

Faith...or the lack thereof

Started by mymomhasafauxhawk in Emotional Support. Last reply by Susan T. 1 hour ago. 26 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

Dr Milton Waner NYC

Started by LoulouYorkshire in General. Last reply by LoulouYorkshire 3 hours ago. 2 Replies

Contacted Dr Waner by email and had a positive response from him. Has anybody had treatment with him and would you recommend him? Would dearly love to hear from you. Many thanks.

radiotherapy nervousness

Started by monica in General. Last reply by Ksucat 3 hours ago. 16 Replies

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 :)Continue

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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.

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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.

Join the Global Genes Webinar on Health Insurance Issues

Find out how you can better evaluate what option is best suited for your individual needs. Learn about the different types of health insurance and emerging trends in benefit design and affordability for individuals with rare diseases.

Join the  FREE Navigating Insurance Issues Webinar on April 30, 2014 at 10am PST / 1pm EST / 6pm in UKRegister Now!

For more information about the Webinar, visit this link.

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Latest Activity

MirandaDS updated their profile
38 seconds ago
LoulouYorkshire and Lolo are now friends
8 minutes ago
Cut it out joined Moni's group

Occipital AVM

This group welcomes individuals with Occipital Lobe AVM's and relatives, friends, and caregivers,…See More
12 minutes ago
harley replied to Melissa Joyce Lott Conner's discussion A dream so real...
"Hi I have most of my seizures nocturnally now, just occasional daytime if I forget my meds. Cant…"
53 minutes ago
Melinda commented on Shalon's group Extremity and Other Non-Brain AVMs
"@Jennifer, sorry for the late response, you've got to stay on Hopkins. They are truly…"
1 hour ago
Melinda and LeaMi are now friends
1 hour ago
Melinda replied to Harold Poag's discussion Hand AVM in the group Extremity and Other Non-Brain AVMs
"My recommendation is this: 1. If he's offended that you're asking questions, get a new…"
1 hour ago
Emma howes posted a photo
1 hour ago

Susan T. replied to mymomhasafauxhawk's discussion Faith...or the lack thereof
"Good for you tracey157 for offering support to another member. Yes,I agree life is unpredictable…"
1 hour ago
Melinda replied to heavansent's discussion new member with a leg avm talking about fibrin in the group Extremity and Other Non-Brain AVMs
"Wow. I've had glue embolization with success. But, you've got to understand what I mean…"
1 hour ago

Susan T. left a comment for Harold Poag
"Welcome, Harold! You have joined a wonderful community for information and yes a cure would be…"
1 hour ago

Susan T. left a comment for Melissa Stamant
"Welcome, Melissa! You have joined a wonderful community for support and information. Please check…"
1 hour ago

Most Popular Content 

1 AVMs and twisty veins

AVMs and twisty veins

Posted by Scotswoman on April 17, 2014

2 I want to drive my car again!

I want to drive my car again!

Posted by Melissa Joyce Lott Conner on April 18, 2014

3 radiotherapy nervousness

radiotherapy nervousness

Posted by monica on April 11, 2014

4 Sudden loss of peripheral vision

Sudden loss of peripheral vision

Posted by mymomhasafauxhawk on April 19, 2014

5 Who Am I ?

Who Am I ?

Posted by momof3blt on April 15, 2014


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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Blog Posts

Walking Again

Posted by John P. on March 18, 2014 at 8:00am 4 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…



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