Left hand and wrist AVM HELP!

I have posted before with no response so my hope is that someone will please give me some feedback. I have a rather large AVM in my left hand that is now growing and traveling up my wrist. I was dinally referred to Shands Hospital at the University of Florida where Dr. Adam Beck and his team seemed to know what they were talking about. I know what I have is not nearly as frightening as one who has an AVM in their brain, but it is still very frightening to me.
The doctors are planning on surgery on 1/29/14 and they are starting with running a catheter up through my arm and possiblily the groin area. Once in they said they will decide what coarse of action to take because they can inject alcohol, foam, or coils in there. They stated that I have a “high flow” AVM and I’m already experiencing a lot of the things that could happen as a result of the surgery such as loss of strength and sensation in some of my hand. They said that my skin dying off and also me losing blood flow to my fingers is a possibility which can lead to amputation. They mentioned something about ulcers that could develope but I don’t remember the reason for that. Has anyone had anything like this and if so please help me understand why I’d get ulcers and if you had skin die off and/or finger loss. Thank you.

Hi, Leslie, I responded by leaving a comment on your page last time. Did you get in touch with Yakes and Rosen? Please join our Extremity AVMs group (click on "Groups" at the top of the page to find it) and repost your discussion there, and you will get many more responses, I am sure. Ulceration can happen from avm treatment, particularly sclerotherapy, but also from a progressing avm itself. When normal blood flow is lost, there can be tissue death (necrosis). I do not know how much experience Shands has with extremity avms. It is very important to have a team experienced with extremity avms.

Thank you so much for your help! I’m still trying to figure out how to navigate through this site so I now know to post on the extremities group. The team of doctors at Shands seemed to be familiar with this and were very informative, but maybe I just feel that way because they were the only doctors I’ve met with ones to have ANY experience with it at all. I will check into this Dr. Yakes you are speaking of, but I’m concerned about the cost. I have medicaid and not many doctors take state insurance.