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Featured Discussions
After Surgery
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…
Amazed at how the removal of my CM took some symptoms with it :))
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. :)
Not knowing when you're going to die but knowing its coming is a crazy feeling.
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?
What do you like to do to to occupy your time with?
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
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
Homepathic
Started by Tana Lawson-Amoruso in Symptoms & Treatment 1 hour ago. 0 Replies 0 Likes
I have talked to numerous surgeons and every time I am paying $100 - $400 a pop for film reviews for all of them to say oh my, you need to have something done but we cant, its to risky! Then followed up by a...I suggest you call Dr. _________ so we…Continue
After Surgery
Started by Coolj45 in General. Last reply by Mary Peterson 2 hours ago. 14 Replies 1 Like
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…Continue
Dreams and reality after surgery .?
Started by richwag in General. Last reply by tdz103m 2 hours ago. 5 Replies 0 Likes
Last month I had my avm removed via craniotomy and I felt amazingly well with a good sight to recovery, a few jitters with an infection but I'm getting there. The past two weeks I seem to be going down hill feeling a bit down and not my usual cheery…Continue
My asymptomatic AVM story
Started by Lyla in General. Last reply by Lyla 4 hours ago. 7 Replies 4 Likes
Hello, I am writing this discussion post, not so much for myself, but for anyone else down the line that may be looking for a story similar to their own (as I didnt find much.)In May of 2012 around the time I was under extreme (somewhat…Continue
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
Tana Lawson-Amoruso posted a discussionHomepathic
I have talked to numerous surgeons and every time I am paying $100 - $400 a pop for film reviews…See More
Mary Peterson replied to Coolj45's discussion After Surgery"I can share with you what I experienced with my son, I think every person goes through many…"
tdz103m posted a blog post52nd Birthday
Didn't think I'd get this far, considering the doom and gloom I received when first dxed in 1988.…See More
tdz103m replied to richwag's discussion Dreams and reality after surgery .?"I didn't remember dreaming for a while after my aneurysm. I don't have half the dream…"
Most Popular Content
| 1 |
Not knowing when you're going to die but knowing its coming is a crazy feeling.Posted by Jaanachka on April 24, 2013 |
| 2 |
Peripheral vision "collapse"Posted by Tina White on May 12, 2013 |
| 3 |
My asymptomatic AVM storyPosted by Lyla on May 17, 2013 |
| 4 |
my surgery is tomorrowPosted by Scotswoman on May 12, 2013 |
| 5 |
After SurgeryPosted by Coolj45 on May 9, 2013 |
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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!
Central Pain Syndrome: lifestyle changes According to recent...
Central Pain Syndrome: lifestyle changes
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
"Hey guy‘s I‘m kinda new here but I have to say that using the blog here on the AVMSurvivors.org main..."
“Hey guy‘s I‘m kinda new here but I have to say that using the blog here on the AVMSurvivors.org main page has become really therapeutic for me. It’s a good way to get things out of my system. Would really love soon feedback from every as many of you guy’s as possible.”- AVM Support Network
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For millions of people suffering from kidney diseases, NephroticSyndromeSupport.org is invaluable, as patient-to-patient interaction allows for an exchange of support and information. Click on this link to see how we launched our Nephrotic Syndrome Support site on CNN.com. http://ireport.cnn.com/docs/DOC-937040Bensfriends.org Posts Milestones on Rare Disease Day 2013
Bensfriends.org champions people who suffer from rare diseases by raising awareness, fostering connection and empowering them. In 2012, the global social enterprise surpassed performance milestones despite meager resources, making it a major online social media advocate for orphan diseases. Read more from CNN iReport as Ben’s Friends Resident Writer, Armando Abrero shares report!Best Of Ben’s Friends – February 2013
8 Feb 2013 – AVM Survivors – It’s been a long time since I shared anything. My daughter has been so sick. 1 Feb 2013 – Living With CIDP – Attitude AdjustmentBest Of Ben’s Friends – January 2013
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confusion as symptoms mount... time for new dr?
Posted by mamaginof3 on May 9, 2013 at 3:13pm 14 Comments 0 Likes
Since last may, the symptoms that sent me to the neurologist in the first place are getting worse. July 11th, the MRI with Contrast found my avm, left frontal lobe. The neurologist I see right now is not concerned about the avm, and only wants to… Continue
HHT Diagnosis or Suspected
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…
Continue
Dreams... changing
Posted 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,…
Continue
One year since my bleed, more or less
Posted by tdz103m on May 2, 2013 at 5:34am 3 Comments 4 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…
Ben's Friends Co-Founder Scott Orn Featured on Thoughtbot Podcast
Posted by Armando A. on April 21, 2013 at 8:00am 0 Comments 2 Likes
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