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 exceedingly 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.
You’ve found one person with a clavicle AVM, so that’s great. The other person I knew of with an AVM nearby was @TJ127. His AVM was perhaps a bit higher – in his neck as much as it was in his upper chest – and was discovered decades ago. Unfortunately Tom passed away from a condition unrelated to his AVM perhaps almost three years ago, so we can’t ask him directly for his experience. However, he left a trail of his experience on this site.
What I can tell you is that he was seen at Mayo Rochester and one of his doctors was Giuseppe Lanzino: I got the impression that the two got on well. So if you go anywhere near Mayo Rochester, then it may be worth asking after Dr Lanzino.
Over time, Tom’s AVM affected his lung function, I believe, definitely affected his larynx and in about 2017 went on the rampage upwards and started to head towards his cerebellum. I’m sure Tom’s AVM was large. You’ll find all of the posts by each of us by clicking on our icon, then clicking again, then selecting the Activity tab (second one, after the Summary). It’s in reverse chronological order.
We have one other neck AVM person who comes to mind, who is @Stephanie20. I don’t know what treatments Stephanie has considered yet. I think she was struggling to find a way forwards and lives in the UK rather than the US.
I hope that being a wide community that even though you do have one of the rarest presentations of an AVM, we can still find you friends to talk to.
Hi Rachel, I have a very rare high flow pelvic AVM. Started 1990 and last surgery 2008. Dr. Robert Rosen is without a doubt, the best in the world. He is with Lenox Hill. Tell him Tom Y said, “Hello”.: I’ve had about 15 embolization. All the best, Tom
