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AVM Survivors Network

13 yr. old with mid-thigh high-flow AVM fed by femoral artery.... seeking the best to treat it and need guidance

#1

Our 13 yr old daughter was just diagnosed with a “high-flow AVM of the right mid-thigh”. We discovered through an echocardiogram that it is fed from the femoral artery… they want to do an mri w contrast to see how many branches are feeding it. It has hurt her since she was about 5 yrs. old. We live in Idaho so it is hard to find specialists or even figure out what the problem is to know where to look for help. We were told it was a hemangioma for many years. Then we were told it was a Cavernous Vascular Malformation and she had 5 laser treatments a yr ago in Salt Lake utah. It helped temporarily but as she is on the cusp of puberty it is growing rapidly. I have found Boston’s Children’s Hospital AVM center and Lenox Hill Dr. Robert Rosen… I am getting her files together to go to each place for consultation. I want to take her to the very best… would you recommend these places?
I would appreciate any advice… it is so painful for her that she compression wraps it and she says she wants cut open and it whacked out! ;o(

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#2

You might also try Dr. Yakes at Swedish medical center in Colorado. He is a leading expert in AVM in extremities. He frequently takes patients from out of state and would be closer to you than the others you mentioned.
Honestly if its attached to the femoral its going to be challenging to manage. If compression helps do it. Ice also helps me, heat helps for some. Rest and elevation also help. If she can tolerate to sleep with a pillow under her leg to encourage the blood to flow back up so it doesn’t get “stuck” in her leg. For most of us its a life long journey of management. Personally I’m at 4 embolizations and a surgical resection and mine is low flow (VM) and entirely within the muscle so there isn’t anything visible. You might get better responses from the facebook group Extremity AVMs. They are bit more active than this website at the moment.

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#3

Dr. Ghaus Malik @ Henry Ford Medical Group 6777 W Maple Rd
West Bloomfield, MI 48322 (248) ■■■■■■■■.
Dr. Malik is an expert in AVMs. He specializes in AVM removal and teaches it to other doctors. He travels around the world teaching and has patients come from other states to have him care for their AVM. I HIGHLY recommend him.
I wish your daughter the best.
Sincerely,
AVM Survivor Joanne :slight_smile:

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#4

I second seeing Dr. Yakes at Swedish Medical Center. He is the leading expert and has pioneered many of the treatments. I see him for my facial vascular malformation.

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