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Hey guys my wife is wondering what it is like recovery time after surgery. She is going to have surgery to have her AVM removed from her head after she has a couple of Embolization procedures done. She would like to know what it is like after they do the Embolization, any strange or different things that have happened. Also she is wondering if anyone has had one removed from their head and if they have what is it like in the weeks after? Do you have to wear or put some kind of protection…
I forgot to share what the surgery did for me. I had a craniotomy for a symptomatic CM in the brainstem (after 3 bleeds) and was having a lot of simple partial seizures. I had a petite mal seizure in the ambulance when I had my third bleed 10 days before my surgery. I have not had any seizures at all since the surgery. It's amazing. The tingling in my face and left foot and hand is gone too. :)
The recent discovery of my AVM has changed my way of thinking completely. My mind can be a very dark place. I really don't know what to do at times.
Does anyone else feel this way? If so, how do you deal or cope with this reality?
For those of you who aren't able to work any more. What do you like to do to fill your time? If you do crafts, what kind of a craft do you do?
I'm hoping all of us can share our ideas to help others (including myself) come up with new things that we can do to fill our time.
Thank you,
Ben
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.
Started by William in General. Last reply by Patti 1 hour ago. 41 Replies 14 Likes
--------------------------------------------------------------------------------------------------------------------------------------"This is a Memorial Forum to remember our fellow AVM members, who came here for support, and gave support." "As…Continue
Started by DragonBlue08 in Symptoms & Treatment 3 hours ago. 0 Replies 0 Likes
I had my radiation surgery yesterday, it was a crazy process, but it went really well over all. The major concern/curiosity I have is that the top of my head in a circle, pin spots being the diameter, has no feeling. Has anyone else had this happen?…Continue
Started by Mountain girl in General. Last reply by eileen 6 hours ago. 26 Replies 0 Likes
Hi all,I had a fistula on my forehead that had been growing for 30 years. IT was successfully embolized in December, but I seem to be having an allergic reaction to something (either the glue or the oil in the glue). My forehead and eyes swell up…Continue
Tags: post, embolization, complication, fistula, cyanoarcylate
Started by Gerda Mullen in General. Last reply by Gerda Mullen 6 hours ago. 10 Replies 1 Like
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...

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headaches are now a daily occurrencePosted by mamaginof3 on May 19, 2013 |
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I have had my op!!!!Posted by Stuart on May 21, 2013 |
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"Its not like its brain surgery, right?"Posted by Revolutionmom on May 20, 2013 |
| 4 |
Am I freaking out?Posted by Acherilyn on May 23, 2013 |
| 5 |
ARUBAPosted by Gerda Mullen on May 24, 2013 |
Added by Rosario Salinas 1 Comment 1 Like
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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!
According to recent literature from Nat’l Institute of Stroke & Neurological Disorders, approximately 100,000 Americans (alone) are affected by CPS. So on a global scale, it’s unknown how many individuals are affected.
from Patti G on AVM Survivors Network
Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to info@bensfriends.org.
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
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Help spread the word about our newest communities by sharing on your Facebook wall: Acute Disseminated Encephalomyelitis, ADD, Amyloidosis, Disabilities,Fabry, Guillain-Barre Syndrome, Lyme Disease, Myositis, Narcolepsy, Nephrotic Syndrome, Sjogren's Syndrome, Traumatic Brain Injury, Von Willebrand's Disease.
Posted by Ben on May 24, 2013 at 10:00am 0 Comments 1 Like
Dear AVMSurvivors Family and Friends,
Celebrating Awareness Months for specific rare diseases are a great way of procuring attention to our cause. By discussing our condition and helping to educate others, our active participation creates…
ContinuePosted by mamaginof3 on May 9, 2013 at 3:13pm 14 Comments 0 Likes
Posted by Fish on May 10, 2013 at 3:25pm 1 Comment 0 Likes
My husband has HHT . Daughter has been tested but no results yet. Praying God spares my children. I have two granddaughters. I have another daughter who has not been tested. We found the HHT Center in Chapel Hill after years of nosebleeds. He has…
ContinuePosted by Michael on May 2, 2013 at 3:14am 5 Comments 1 Like
Hello there,
how it's for you? In my case, I have the paralysis since last october 2012. Before that I was very active with cross country running, dogsport, and so on. The good thing: In my dreams I had no Paralysis. I run in my dreams,…
ContinuePosted by tdz103m on May 2, 2013 at 5:34am 5 Comments 5 Likes
I don't know exactly when it happened because I slept through May 1, 2012. All day.
May 2, I was able to move around a bit. May 3 a bit more but by May 4th I was feeling in the deepness of it and told my wife to dial 911 and it was into the…
Posted by Armando A. on April 21, 2013 at 8:00am 0 Comments 2 Likes
After being featured on a number of publications,…
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