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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
"The AVM Survivors Network Memorial Forum"
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
Radiation Therapy - Numbness on top of my head
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
Hypersensitivity/allergy reaction to NCBA post embolization
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
ARUBA
Started by Gerda Mullen in General. Last reply by Gerda Mullen 6 hours ago. 10 Replies 1 Like
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
heidi commented on chrissyconradcochran's blog post advice/ MRI test not good - cavernous malformation T2 to C2"Dr. Spetzler is really good. He should help. On the east coast, I have also heard great things…"
heidi commented on chrissyconradcochran's blog post advice/ MRI test not good - cavernous malformation T2 to C2"Hi everyone- Heidi here....I share my fears, hope, comfort with all of you- My cavernona is in my…"
ModeratorPatti replied to William's discussion "The AVM Survivors Network Memorial Forum"
"Scott H http://www.avmsurvivors.org/profile/ScottH passed away December 15, 2012. Rest in peace,…"
DragonBlue08 replied to Shell's discussion Mild Anxiety and Depression before Cerebral AVM, now I feel like I am losing my mind! in the group Mid-West AVMers"I really hope you have gotten some relief by now, but I wanted to comment just in case. I am going…"
DragonBlue08 posted a discussionRadiation Therapy - Numbness on top of my head
I had my radiation surgery yesterday, it was a crazy process, but it went really well over all. The…See More
Most Popular Content
| 1 |
headaches are now a daily occurrencePosted by mamaginof3 on May 19, 2013 |
| 2 |
I have had my op!!!!Posted by Stuart on May 21, 2013 |
| 3 |
"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 |
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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-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
16 Jan 2013 – AVM Survivors – Tales from the neuropsychiatrists room 6 Jan 2013 – Rare Diseases – Rare Disease and our SimilaritiesWhat is Best of Ben's Friends?
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May 2013 Community Newsletter
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…
Continue
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 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…
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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