AVM Survivors Network: AVM Support Group - We're AVM Survivors, Here For Your Support...

We're AVM Survivors, Here For Your Support...

If you or a loved one has had an AVM, this AVM support group is for you. We are the AVM Survivors Network, here for your support.

Photos

Loading…

Birthdays

Birthdays Today

Birthdays Tomorrow

Events

TAAF's 5th Annual Aneurysm & AVM Walk!

May 2, 2010 from 8am to 12pm – San Francisco May 2010

Latest AVMSurvivors.org News

1/9/10: Member Survey: How are we doing?

10/1/09: 300 AVM Bracelets sold! Don't have your's yet? Get it here!

8/11/09: July/August AVM Community Newsletter

8/16/09: 1000 members strong!

8/11/09: Our Facebook Fan Page

8/11/09: May/June Community Newsletter

8/11/09: Web site of the Month.

8/11/09: OrganizedWisdom's Favorite AVM Community.

8/11/09: $11,035 Raised for TAAF

Members

View All

Rest In Peace Baby Nathan

January 11, 2009, despite a courageous fight against his AVM, Baby Nathan lost his battle.

Family and friends celebrated his life as he was laid to rest January 17th at Oak Hill Funeral Home & Memorial Park in San Jose, CA.

Community Moderators

	Alicia
	Ben Munoz
	Connie T
	Hanne
	Pauline Horseley
	Ron KS
	Scott Orn
	Shalon

New Facebook Page!

If you are on Facebook, visit our Facebook page and become a fan.

Welcome to AVMSurvivors.org

Welcome. We're glad you found us! Some things you can do on AVMSurvivors.org:

1. Share your AVM story with the community.
2. Ask an AVM question in the forums. If you're newly diagnosed, don't be shy about reaching out.
3. Keep everyone updated via your personal AVM Survivors blog.

If you have any suggestions on how to make this community even better, we'd love to hear. Read more about using AVMSurvivors.org.

*Keep in mind this is a support group of patients for patients (and friends and family). Unless a person states otherwise, we are not doctors.

What's an 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. They are comprised of snarled tangles of arteries and veins. AVMs of the brain or spinal cord (neurological AVMs) are believed to affect approximately 300,000 Americans. (read more...)

Latest Activity

mary kate replied to Danielle Gladstone's discussion 'Scared'

I am so happy for you that your husband is making so many improvements. I think doctors try to prepare the family for the worst. They told my mom I would probably not live and if I did I would almost definitely be paralyzed and would take over a yea…

2 minutes ago

mary kate replied to Jamie Pantelis's discussion 'It's GONE'

CONGRATS!!! I am soo happy for you. I don't wanna rain on your parade, but my docs told me the same thing. Then, they broke the news that the angio shortly after surgery is not accurate due to sweeling and you have to have another angio a year after…

6 minutes ago

Jason Eppert left a comment for Jason Eppert

39 minutes ago

Jamie Pantelis added a discussion

It's GONE

I went today almost 3 weeks post-op to have my staples removed. They hurt coming out and I am happy I can now rest on my right side and get a hair cut without the fear of having them touched. The doc told me that my angio I had before I left the hos…

44 minutes ago

Jamie Pantelis IT is Gone!!! DIng dong the AVM is GONE!

50 minutes ago

Caryn Dupree updated their profile

1 hour ago

Shane Crotty added 3 photos

1 hour ago

Caryn Dupree I'm amazed at how many people across the world who have/had an AVM. Being a survivor has been worth it-look at all the friends I have made!

1 hour ago

Caryn Dupree left a comment for Scott

1 hour ago

Jenny Aiken is now friends with Jessica Ables and Scott

1 hour ago

Caryn Dupree left a comment for Ninibeth Ramirez

1 hour ago

Alyssa left a comment for Emalyn

1 hour ago

Alyssa left a comment for Emalyn

1 hour ago

JH updated their profile

2 hours ago

Debbie Considine commented on Greg Z's blog post 'my AVM bleed, one of the best things that happened to me'

Hi Greg, Through having an AVM and discovering this website, I have been blessed with a great circle of friends that I never would have known, and I count you among them. Take care, Debbie

2 hours ago

Debbie Considine left a comment for Steven Leary

2 hours ago

Debbie Considine commented on Johnny Meadows's blog post 'Unsure'

Hi Johnny, I would get an MRI. The AVM in my neck didn't show up on the two cat scans that were done on me. Take care, Debbie

2 hours ago

Debbie Considine commented on James Larken Smith's blog post 'Inspiration From My Grandmother'

Hi James, Glad you had this wonderful woman as your grandmother. Peace be with you at this time. Take care, Debbie

2 hours ago

Toni Yeomans updated their profile

2 hours ago

Steven Leary replied to Toni Yeomans's discussion 'Anybody else on Dilantin?'

I have taken Dilantin since May 2009, 200mg in the morning and 300mg at night. It keeps me tired and I struggle for words quite a bit. Other than that it hasn't caused me to lose any hair or be depressed. It would be nice if I could quite taking thi…

3 hours ago

Forum

Scared 12 Replies

Started by Danielle Gladstone in General. Last reply by mary kate 5 minutes ago.

It's GONE 1 Reply

Started by Jamie Pantelis in General. Last reply by mary kate 9 minutes ago.

Anybody else on Dilantin? 3 Replies

Started by Toni Yeomans in General. Last reply by Steven Leary 3 hours ago.

Blog Posts

MRI after coiling

Help!Has anyone had MRI after coiling for AVM on the Vein of Galen(brain) with aneurysm and von Willebrand Disease(bleeding disorder)?My son's doctor wants to do a MRI to determine if he is a candidate for a surgery to get rid of his shunt.He is currently in the hospital due to infection after shunt revision.He has an external drain,a PIC line and LOTS of coils.I've heard of stents moving and/or heating up,IV's melting and bleeding.And all this is from the makers of the MRI machines.I seem to be… Continue

Posted by Erin Hurley on February 7, 2010 at 2:13am — 3 Comments

my AVM bleed, one of the best things that happened to me

I know this may sound crazy but I think my AVM bleed was one of the best thing that ever happened to me. My bleed was in Aug 2006. After an embolization, radiation and hours and hours of therapy (I still have short-term memory problems) my AVM bleed has changed my life for the better.

Let me explain, I don’t take things for granted anymore. I tell my wife I love her all the time (bleed happened 2 weeks after honeymoon), I try to help her all the time because I kn

… Continue

Posted by Greg Z on February 6, 2010 at 11:07am — 5 Comments

Inspiration From My Grandmother

I have just returned from a trip to Brownwood Texas. It was a good trip, but a bitter-sweet one. My grandmother, known to her grand kids as "Nennah", passed away last week at the age of 90. I was there to attend her funeral. One of the things that I most remember about her, is she was a fighter. She had serious h… Continue

Posted by James Larken Smith on February 3, 2010 at 10:17pm — 5 Comments

Omega 3's, 6,s anyone?

Hello all, Im curious if anyone has had any good results with alternative combined with there required treatments? I have had accupuncture in the past, but not for my avm. I notice if I have a massage, it seems to help on my headaches for a day or two and my physical therapist is looking at getting a tens unit for my constant neck/shoulder pain.
I have a son with Autism, and noticed over the years that for him, his diet seemed to help, and also wearing a weighted vest helped him to notice where… Continue

Posted by Kristina on February 3, 2010 at 4:37pm — 1 Comment

Unsure

Well i went to the neuroligst and he did a catscan and said my problem was migrains i told him about my sister haveing avm and asked him to do a mri but he said that he was sure it was migrains and gave me some drugs and told me to come back in 3 weeks. So far the pills are kinda working but i still feel the pressure in my head i think i need to get a second opinion anyone have any advice.

Posted by Johnny Meadows on February 3, 2010 at 4:23pm — 4 Comments

Welcome to
AVM Survivors Network: AVM Support Group

Sign Up
or Sign In

Buy an AVM Bracelet!

Proudly wear your bracelet and help raise awareness for AVM's and Support our friends at TAAF.

Click here to buy!

Groups

Parents of AVM

93 members
Extremity AVM's

79 members

Inoperable AVMs

55 members
Teens with AVMs

4 members

Spouses Of AVM Survivors

3 members

View All

Badge

Loading…

Get Badge

Badges | Report an Issue | Privacy | Terms of Service