Hi Rachel,
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.
Welcome on board!
Richard