AVM in hand and arm
My 8 year old daughter has an AVM in her right hand and arm. She has undergone two surgeries and is scheduled for her third the end of July. She has limited use of the hand, very noted swelling from the hand through the forearm, and constant pain which worsens at night or if it's hit. She does not have any of the discoloration that I read is present with most AVMs. The doctor has told us very little about her condition other than he "thinks" it's an AVM and not a VM and that it's rapidly growing, deep, invading the muscle, and extensive with a lot of little "fingers". Her second surgery was a few weeks ago and the doctor believes he removed 1/2 of it. The surgery was 8 hours and the next we are being told will be equally extensive. We are also being told that complete extraction is impossible and she will have regrowth and require multiple surgeries throughout her lifetime. I have been reading about multi-disciplinary clinics like Children's Hospital of Boston, Stanford, and Johns Hopkins that have teams of doctors who specialize in treatment of Vascular Anomalies. I live in TN and no such clinc exists in my state. I looked at the physician resource list but it looks more like doctors that treat hemagiomas and there are no doctors listed in TN. Our current doctor is a Plastic Surgeon on rotation at a Vanderbilt Children's Hospital in TN and he has some experience with AVMs but I don't know how much. He says he is qualified to adequately treat. Am I making a mistake with a Plastic Surgeon and should I be looking at clincis that specialize in Vascular Anomalies? Can anyone tell me which are noted as leaders and which deal with the extremities? Most of what I read is about the neck and head. I don't want to drag my daughter accross the country if she can receive the same treatment here... but I don't know how to answer that question and of course my foremost concern is getting the best treatment to ensure her quality of life is as good as possible.