WELCOME

Welcome! You're not alone.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Discussion 
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy?

If you are concerned about privacy, please use your last initial in place of your last name.  You are not required to use your real name at all here.

 

To change your name, click here.

Need A Doctor or Specialist?

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

"To Know the Joy of Giving"

Learn More About Your AVM

Brought to you by Patient Power.

ClinicalTrials.gov Studies

Loading… Loading feed

Thanks To Our Sponsors

Want to sponsor this site? Corporate and individual sponsors welcome. Email sponsor@bensfriends.org.

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.

Tim
Debra
DancerMom
Barbara H.
Ninibeth
Dreyx2000
MartinBrooks

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter in the Chat Room.   
5. No specific doctor or hospital name mentioned in a negative context, for legal reasons
6. No inappropriate communication with minors here
7. No sharing of members' posts to other sites without their express permission.
8. No promotions, solicitations, or personal fundraising requests.
9. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.

There is a lot of grey area here.  When in doubt, leave it out.  Let's keep it nice and clean.  :)

Featured Discussions

Loading… Loading feed

Gift Store

 

What are 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

Sclerotherapy side effects

Started by Heather Alp in Symptoms & Treatment. Last reply by Carol Stark 12 hours ago. 8 Replies

So... A lot has happened since I've last updated my profile (like getting my thumb amputated) and I need to update but I've been undergoing another series of sclerotherapy treatments ever 6 weeks. I just had number 3 of this series about a week ago.…Continue

Tags: sideeffects, treatment, Sclerotherapy

Sleeping or Lying down after Craniotomy ?

Started by Martin Brooks in General. Last reply by Martin Brooks 14 hours ago. 9 Replies

Hi guys, Hope you are all doing good. I had a rupture which led to craniotomy then another craniotomy 7 months later to remove the AVM all on my right temp lobe side, I still have issues lying in bed on my right hand side. It feels weird and…Continue

Tags: Craniotomy, Sleeping, Lobe, Teporal, Right

help!!

Started by Tatiana in Emotional Support. Last reply by Martin Brooks 17 hours ago. 3 Replies

I am a student. I had a bleed and crainotomy five months before I had to go to college. (I have no consequences, I function normaly now) I have trouble studying and now I dont know if it¨s because of the medications or the crainotomy I had 10 months…Continue

Steroids almost 18 months after gamma knife

Started by Niyani in General. Last reply by Niyani yesterday. 7 Replies

Still trying to get rid of headaches to where I can at least function.First they gave me a occipital nerve block without steroids. This consisted of two shots in my head and two in my neck. I went two weeks and it did not work.I have tried…Continue

Mobile App and E-Book Available for Download!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity

Erin H replied to mandirenee's discussion AVM in knee in the group Extremity and Other Non-Brain AVMs
"Hi Mandirenee, AVMs can be internal or external- the internal ones don't always show- except…"
4 hours ago
Ashleeyy Hudson liked honeybeeB's discussion Uterine AVM?
4 hours ago

Moderator
Debra and woolcool321 are now friends
5 hours ago
mollysmom left a comment for Susan T.
"I told the neurologists before Gamma Knife that I had grandchildren I wanted to watch graduate so…"
6 hours ago
mandirenee added a discussion to the group Extremity and Other Non-Brain AVMs
Thumbnail

AVM in knee

In 2007 after 1 1/2 years of knee pain I noticed a small bump by my knee cap. Ortho Dr. ordered MRI…See More
6 hours ago
woolcool321 posted a photo
9 hours ago
mandirenee joined Shalon's group
Thumbnail

Extremity and Other Non-Brain AVMs

For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!See More
11 hours ago
Carol Stark posted a status
"Sclerotherapy side effects pics I've added below. At first my foot looked like a dark purple almost black"
11 hours ago
Carol Stark posted photos
12 hours ago
Carol Stark replied to Heather Alp's discussion Sclerotherapy side effects
"Hi, I had a horrible burn like that on the bottom of my foot after the second sclerotherapy. It has…"
12 hours ago
tinkersyl replied to Heather Alp's discussion Sclerotherapy side effects
"the first pic is after the blisters popped, the second pic is after I saw a wound specialist, all…"
13 hours ago
Heather Alp replied to Heather Alp's discussion Sclerotherapy side effects
"It's quite painful where I can see blisters forming under the skin. It's very sensitive…"
14 hours ago

Most Popular Content 

 
 
 

Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

To Support AVMSurvivors.org, Click an Ad. Or Two.

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Photos

Loading…

Blog Posts

Radiation hair loss

Posted by Kosta on February 21, 2015 at 6:56pm 1 Comment

doing ok but I have a question I had my radiation Jan 27th, my hair started falling a week ago or so. How long it will before they grow back. will they ever grow back? What should I expect from the radiation. So far I felt nothing my life is…

Continue

Partners

BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

Lion Snaps & Burgundy Butterfly

About

Ben Munoz created this Ning Network.

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service