I'm so sorry you are going through all this. It must be terribly painful and frustrating. I'm not 100% of who would be the best person to consult but perhaps you might start by sending an email to one of these doctors:
Dr. Robert Rosen, Vascular Lesions of Arms and Legs Interventional Radiologist
Dr. Joseph Edmonds, Lymphatic Malformations Surgeon
You can email them but going to "Ask the Expert" sidebar on the main home page. They might be able to (or one of the other doctors on that list) give you some guidance in this area.
VBF Hemangioma Forum Moderator