New here: AVM in supraclavicular fossa, near brachial plexus

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Hi friends! :waving_hand:

I’m Rachel, and I’m new to this diagnosis and community. Reaching out to say hello and get connected.

I’ve just wrapped up initial diagnostics (MRIs and CTs with/without contrast, biopsy, angiogram) and I’m in the early stages of researching and seeking treatment.

Right now, I’m scheduling consults to help me locate the right high-volume facility and multidisciplinary team.

From what I’ve heard from doctors and seen so far in my own research, it seems that high-flow AVMs in the supraclavicular fossa, near the brachial plexus may be rare and complicated to treat.

I’m passionate about using my experiences to support others on their healing journey. I’ve already developed my own referral templates to give to my interventional radiologist, and that helped open the door to scheduling consults at Mayo Clinic Rochester and Johns Hopkins.

Are you treating an AVM in this area? If so, please say hi! Need help advocating for yourself with your healthcare providers? I’m happy to share anything I’m learning along the way!

We’re in this together - we’re never alone, no matter how isolating the experience feels. Wishing you peace, protection, insight, and comfort right where you are in the process. :sparkling_heart:

With gratitude,
Rachel

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I guess my message didn’t go through. I was diagnosed in 1990, pelvic AVM. DR. ROBERT ROSEN saved my life. He is out of Lenox Hill. Between 1990 - 2008, I’ve had about 15 procedures and finally, asymptomatic, for the most part. They knew a lit less in 1990 compared to today. My vascular surgeon at Princeton hospital, in 1990, said my pelvic AVM was “the size of a softball and shaped like a twinkie”. He was head of vascular surgery. When I asked him what the plan was, he said he wouldn’t “touch my case with a 10 foot pole. At that time he said there were only 3 docs at the time he knew of. Since I was in NJ, I chose Dr. Rosen in NYC. NICEST GUY IN THE WORLD ALSO. Dr. Rosen can advise you. Wishing your family all the best, TOM

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