Extremity and Other Non-Brain AVMs

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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: 569
Latest Activity: 20 hours ago

Discussion Forum

Chest AVM

Started by Alan Schechter. Last reply by Alan Schechter Feb 23. 13 Replies

possible rupture

Started by Brittany Baisden . Last reply by LINDA GAYE MILLER Feb 23. 3 Replies

Disability and extremity AVM

Started by Desiree. Last reply by LINDA GAYE MILLER Feb 23. 3 Replies

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Comment by Bo62 on Wednesday
I live in Manteca, Ca. It's 12 miles from Tracy

Moderator
Comment by Debra on Saturday

Awesome Bo62. It is such a moving experience every time I have been there. Maybe shortly before the Walk, we can get a thread going and see who will be there for the walk. Where do you live?

Comment by Bo62 on Saturday
Thank you Debra. I'll be there

Moderator
Comment by Debra on Saturday

Hi Bo62- the AVM walk in San Francisco is for anyone with an avm anywhere. I am an extremity Survivor and they welcomed me just the same, as it should be. Hope to see you there. :)

Comment by Bo62 on February 28, 2015 at 8:37am
On the avm walk in sf on May 3. Is that for brain avm or for anyone with an avm?
Comment by Bo62 on February 22, 2015 at 6:20pm
Hoping everyone is having a good day. Watched Stil Alice today and Julienne Moore was awesome. Hope she gets the Oscar.
Comment by Alice (Allie) Elaine Mastello on February 20, 2015 at 12:57pm

Leslie, do you know the name of the Dr. at Mayo that has a specialty in AVMs? I am searching around for Dr. names, I am getting iron infusions every 4 weeks. Need to find someone to help me. I am trying to do my own research with lots of help from our group.


Moderator
Comment by dancermom on February 20, 2015 at 8:40am

Leslie, I really appreciate your posting. Personal experience is so helpful. Thanks!

Comment by Leslie A McDonough on February 20, 2015 at 8:36am

Oh, another thing for you Nataraj, I am living in Indianapolis and I travel to go to Mass General. Sometimes one has to go further to get things done. I heard from one of my local Docs that the Maio clinic has a good Doc for our type of AVM's - he is not in my insurance as being a provider so I couldn't go there

Comment by Leslie A McDonough on February 20, 2015 at 8:34am

Hi Nataraj, I find I must comment because I too have an AVM running off my left Iliac artery and have been thru many procedures as well - maybe 8 or more I don't really remember any more. The last one was with Dr. Michael Watkins of MASS General hospital. I am not a proponent of alcohol oblation as I had that done with another Doc and had some tissue and muscle damage with it. I do recommend a second opinion. I had one Doc who did 5 procedures in 13 months and that is when I said halt to all of this and found Dr. Watkins. Other Doc was well meaning but just not experienced in our type of problem. Dr. Watkins ended up putting in a stent and coils and it worked very well - the stent probably working the best. Stents are used for more than opening up arteries. Your situation is personal to your own body - don't be afraid to question your physicians. They work for you....I will pray for you

 

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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…

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