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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

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

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

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

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...

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Homepathic

I have talked to numerous surgeons and every time I am paying $100 - $400 a pop for film reviews…See More
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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…"
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tdz103m posted a blog post

52nd Birthday

Didn't think I'd get this far, considering the doom and gloom I received when first dxed in 1988.…See More
2 hours ago
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…"
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Most Popular Content 

1 Not knowing when you're going to die but knowing its coming is a crazy feeling.

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"

Peripheral vision "collapse"

Posted by Tina White on May 12, 2013

3 My asymptomatic AVM story

My asymptomatic AVM story

Posted by Lyla on May 17, 2013

4 my surgery is tomorrow

my surgery is tomorrow

Posted by Scotswoman on May 12, 2013

5 After Surgery

After Surgery

Posted by Coolj45 on May 9, 2013

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    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

    Best of Ben's Friends

    Launch of Nephrotic Syndrome Support on CNN.com

    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-937040

    Bensfriends.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 Adjustment

    Best Of Ben’s Friends – January 2013

    16 Jan 2013 – AVM Survivors – Tales from the neuropsychiatrists room 6 Jan 2013 – Rare Diseases – Rare Disease and our Similarities

    What is Best of Ben's Friends?

    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.

     
     
     

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    Blog Posts

    confusion as symptoms mount... time for new dr?

    Posted by mamaginof3 on May 9, 2013 at 3:13pm 14 Comments

    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

    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

    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

    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…

    Continue

    Ben's Friends Co-Founder Scott Orn Featured on Thoughtbot Podcast

    Posted by Armando A. on April 21, 2013 at 8:00am 0 Comments

    After being featured on a number of publications,…

    Continue

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