I agree that you should contact Dr. Levitin as well as Dr. Burrows in New York. Our daughter has an AVM in her hand and was seen by Dr. Burrows.Unfortunately as we live in Canada, we could not get treatment from her (politics)!! but Heather is currently receiving treatments in Montreal. We are just across the river from you. I have friends that work at Henry Ford. If you want to contact me, please do. Heaz was diagnosed nearly 10 years ago and only started treatment recently.