Kate,
I’ve done a bit of searching through posts on our forum here and one name that came up recommended near you was Saadi Ghatan at Mount Sinai hospital.
And
Like John, I’m the patient and (I think like John) I discovered my AVM I’m in my fifties, so to have the patient be my son or daughter at such a young age, I can’t imagine!
My own personal experience is that I got a bit more comfortable about the whole idea of neurovascular surgery by reading others stories and just the time for it to all sink in. John had his treatment through radiotherapy and I had my dural AVF treated through embolisation and I feel both are eminently gettable throughable. Embolisation followed by excision is a very common method of getting rid of these things: the embolisation reduces some of the risk in surgery.
I’ve shared your story with a few people. I hope some of them will chip in.
You’re not alone. We have a bunch of parents and carers who have been through what you’re going through and have done so successfully. It is quite the rollercoaster but you will get off at the other end!
All the best,
Richard