Hi all, new to the site, but not new to AVMs. I have never received any treatment for the AVM in my right arm and shoulder. In fact, the last time I even had it evaluated was about 15 years ago. I have a permanent range of motion restriction in my elbow of about 30º, and constant pain, although I am fortunate to have a very high pain tolerance - perhaps because of the AVM!
I now live in the DC Metro area, and was curious if anyone knew of an AVM extremity expert nearby so that I could have this checked out for peace of mind. I can tell that it has grown a bit, but so have I :). I have never allowed my AVM to be considered a disability, and have only recently even bothered to explain what it was, rather than simply hide the inside of my elbow where it is visually apparent. However, I am fully aware of the risks and figure it might be beneficial to review any medical improvements that may have been made since my last AVM-related evaluation.
Anyhow, love the site. Be in touch.
Hi Kyle. My AVM is in my left hand and I have also never considered mine a disability. I live in the midwest and also am hoping to find a expert in my area (since Mayo in Minneapolis has been very disappointing).
Just wanted to send you a note and hope that you find a medical expert in your area. Wishing you the best.
Hi Kyle, I have had an AVM since birth on my right thigh. It has grown significantly over the years. This last spring I had an evaluation by my internist and it was thought that I probably should have the AVM looked at. The last time I did anything was 22 years ago. I found a wonderful doctor under the Doctors tab on this website. I live in the Milwaukee area and found a doctor less than 3 miles away. She wrote a text book on the treatment of AVMs. Anyway she has done two embolizations with alcohol & glue and I have the third scheduled. My AVM is only in the muscle of my thigh and abdomen, no bones and no organs. She is very confident that she can totally eliminate the AVM. She also has me on doxycycline. I have had minimal pain but I also have a high pain threshold. I have never let the AVM slow me down.
Best of luck
My daughter has an AVM in her upper thigh buttock area and has had 4 embolization's at Lenox Hill Hospital in New York City with Dr. Robert Rosen. I would highly recommend him and his team, they have been amazing with her. We live in Connecticut so she has all her MRIs & pre-op apps done here so we don't have to travel back and forth.