We are AVM survivors, here for your support.
For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!
Location: medical/symptom type groups
Latest Activity: 20 hours ago
Started by Alan Schechter. Last reply by Alan Schechter Feb 23.
Started by Brittany Baisden . Last reply by LINDA GAYE MILLER Feb 23.
Started by Desiree. Last reply by LINDA GAYE MILLER Feb 23.
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?
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. :)
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.
Leslie, I really appreciate your posting. Personal experience is so helpful. Thanks!
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
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
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…
May 3, 2015 from 9am to 1pm – Crissy Field...... (Or a town near you--read on)
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