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Featured Discussions

AVM Survivors Site Rules.

Hi all, I would like to remind everyone of the site rules here, Perhaps this is a message for new members or old ones that have never read them, Please if you have some time have a browse on the following link :


These rules are here to help and protect our members, Thank you in advance.



What are 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.


CT Scans after bleed

Started by Eric Spring in General. Last reply by tdz103m 1 hour ago. 2 Replies

Just curious-- I was a little in delerium after my brain bleed but I think I had 10-15 CT scans after my bleed. Anyone had the same experience? I know the radiation from the CT scans is not good! I'm wondering if it's "normal" to have so many scans!Continue

Cyber Knife Radiation Side Effects

Started by amcoffey in Symptoms & Treatment 4 hours ago. 0 Replies

Hello All,I am due to start cyber knife radiation on June 1st - June 3rd (three treatments each lasting about 40 min). I will be on a steroid for roughly 2 weeks during the process to help reduce swelling of the AVM.Just wondering what anyone's…Continue

4 weeks post craniotomy

Started by MomOfTwoBoys81 in General. Last reply by Mike 3 hours ago. 1 Reply

AVM free!!!! 4 weeks post op today!! Thank God!! So far, so good. Craniotomy was Thursday April 28th 2016. Removal of AVM in the right occipital lobe. Surgery took 7.5 hours. NICU for 48 hours, then "step-down neuro floor" for 4 more days. I only…Continue

Delicate question for brain AVMers

Started by tdz103m in General. Last reply by Mike 3 hours ago. 5 Replies

Do you feel your AVM has impacted your: IQ, your scholastic ability, however you want to put it, measure it. Tough situations require tough questions.ThanksContinue

Feeling scared

Started by Simone in Emotional Support. Last reply by LoulouYorkshire 5 hours ago. 1 Reply

Hi everybody, my name is Simone and I'm 22 and from the UK. I was diagnosed with an AVM in my upper left cheek, nostril and lower jaw when I was 14 years old. I can say I've been in good health over the years and the only symptom from the AVM in…Continue

Avm survivors meet & greet..

Started by jasmine in General. Last reply by jasmine yesterday. 3 Replies

Would anyone be willing to meet up to share theirstory for the world? I know we are all dealing with this but we have to be strong and spread awareness to others! Would anyone mind being onfilm to share their story?

Latest Activity

tdz103m replied to Eric Spring's discussion CT Scans after bleed
"I had a lot of scans for about 3 years after my bleed. I glowed."
1 hour ago
BCF replied to Nina Victoria's discussion Feeling completely alone...
"Nina, It is not unusual for DAVF's to require more than one treatment session. As others have pointed out, embolization of the dominant feeding vessels sometimes allows smaller vessels (not evident on initial evaluation) to grow and re-fill the…"
1 hour ago
BCF replied to Eric Spring's discussion CT Scans after bleed
"You didn't say what period of time this encompasses. It isn't too unusual to have 2-3 scans in the first 48 hours then daily scans for a week or so after that. You will get more scans if your neurological exam changes- trying to make sure…"
1 hour ago
awesome_possum replied to awesome_possum's discussion AVM in Pons of Brainstem
"Eric- I ended up having cyber knife treatment through the University of Utah with Dr. Randy Jensen last April. My follow up scan was this March and the AVM is barely even visible on the scans anymore. Crossing my fingers that it will be obliterated…"
1 hour ago
Eric Spring posted a discussion

CT Scans after bleed

Just curious-- I was a little in delerium after my brain bleed but I think I had 10-15 CT scans after my bleed. Anyone had the same experience? I know the radiation from the CT scans is not good! I'm wondering if it's "normal" to have so many scans!See More
2 hours ago
Eric Spring commented on amcoffey's blog post Cyber Knife Radiation
"good luck! I just had cyberknife for my brainstem on May 5th. Getting another treatment next year. I hope they can knock this thing out for you!"
3 hours ago
Eric Spring replied to awesome_possum's discussion One Year After Cyber Knife Update
"oh my goodness that's great news! How many units of radiation did you get for your treatment? I only got 12 because it was wrapped in healthy tissue, and I'm gonna get another 10 next year. That's great to hear your gamma knife was…"
3 hours ago
Eric Spring replied to awesome_possum's discussion AVM in Pons of Brainstem
"It's a year and half later, but I just saw this post. I have an avm about 2.3 in my pons. I'm getting treated by a neurosurgery team at NYU, specifically Dr. Kondziolka, who is the best of the best when it comes to gamma knife treatment. I…"
3 hours ago

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Most Popular Content 

1 Neurosurgeon Experience with Head and Neck AVM

Neurosurgeon Experience with Head and Neck AVM

Posted by SalBella on May 19, 2016

2 Change Of Diet?

Change Of Diet?

Posted by Kellie on May 20, 2016

3 Started walking today!

Started walking today!

Posted by Abbey on May 23, 2016

4 Crainiotomy scheduled for next Wednesday

Crainiotomy scheduled for next Wednesday

Posted by Lindsay G. on May 17, 2016


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