Extremity and Other Non-Brain AVMs


Extremity and Other Non-Brain AVMs

For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!

Location: medical/symptom type groups
Members: 513
Latest Activity: yesterday

Discussion Forum

Comment Wall


You need to be a member of Extremity and Other Non-Brain AVMs to add comments!

Comment by dancermom on April 16, 2014 at 6:12am

Welcome, Tracydd!

Comment by Tracy doggy daddy on April 16, 2014 at 6:04am

Hello everyone, new to the group and this site. Will try and take baby steps and find my way around here.

Comment by Msamberxo on March 14, 2014 at 10:11pm
Laura jurgens yes we would balance very well haha. It's nice to know I'm not alone since pelvic avms are so rare! Have you experienced any nausea or chest pain from yours?
Comment by laura jurgens on March 14, 2014 at 6:27am
I have a very large one in my left hip! We could balance out! Ha!
I have discovered that if I am VERY well hydrated, I have much less pain. Also, perhaps seeing a more aggressive doctor like Wayne Yakes in Denver Colorado, might be a consideration. When I consulted with the head of vascular intervention at Mayo, he said Yates is a True Expert.
Comment by Msamberxo on March 14, 2014 at 5:48am
I have a very large 15x9 pelvic avm in the muscle of my rt hip that has been resected and embolised multiple times and it keeps coming back. My surgeons at Cleveland clinic have been great but are now telling me the inu thing I can do is pain management and I can't handle the symptoms anymore. I have pain in my stomach hip back and leg that is excruciating along with extreme nausea and fatigue has anyone else experienced this or have advice for steps to take I see my dr next week agai and I all see what she says. Also has anyone ever used radiation or chemo I kno it's used for brain avms but never heard possibilities for others.
Comment by Jennifer on March 13, 2014 at 11:02pm
Thank you Sheri! We are some nervous parents. We are hoping we made a good choice going to Mass. Right now my son is mobile but has a lot of pain in his legs and back sometimes arm and also a headache. Can't walk for a long time so we have a wheelchair. We have been searching for about 5 yeses as to what is wrong.
Comment by Sheri Melander-Smith on March 13, 2014 at 10:50pm

HI Jennifer
I have a spinal avm at T11-T12. I have had it treated by Dr. SPetzler in Arizona. I have had my avm embolized many many times and also have had it surgically removed. I would be happy to talk to you about my procedure and how it went. You can accept my friend request - or read about my story on my webpage at sherimelandersmith.com. We can also correspond through email, just answer my contact page on the web. I hope things go well for you. It is not an easy road. I am here to help or listen if you need someone.

Comment by Jennifer on March 13, 2014 at 10:34pm
Well we leave S Florida tomorrow for Mass General. We sent our records out to also Boston Children's, John Hopkins, Columbia, Barrow, Miami Chikdrens. Mass seemed to give us the best response although we were hoping Barrow would take us on but they seem to only want us after sons angiogram to confirm this for sure. They were a little wishy washy what they thought after reviewing two separate mri/mra we had. Kind of disappointed. But we have had enough doctors say they see the area of concern from t11-L2 and needs an angiogram to confirm. I guess everything falls into place as it should. At least we are headed up where there are amazing institutions within good driving distance if we need to look further although we are putting our hope and prayers on Mass at the moment. Any advice?

Comment by dancermom on March 6, 2014 at 3:32pm

I don't know whether Russia has pain specialists as in the US, but if you have them, please consult one, Max.

Comment by Max on March 6, 2014 at 3:08pm

I use also Norco aka Vicodin, but unfortunately 5-8 months and you become addicted, hooked... What to do in the future? Morphine?


Help Us Help Others

Help Ben's Friends

Like, Follow & Forward Us!

Follow Me on Pinterest

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.


  • Add Photos
  • View All

Blog Posts

Walking Again

Posted by John P. on March 18, 2014 at 8:00am 4 Comments

My craniotomy to remove my AVM was early in the first month of the year, but at first I could not walk at all and

many who had the same operation I am sure had the same

problem. After two months in the hospital I was able to

use a…


© 2014   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service