I also have a "internal" VM, mine is throughout my left elbow/forearm it's deeply embedded in the muscle tissue and subcutaneous fat. Mine is also fairly large although I wasn't given the exact size. Mine has cause my VM arm to become slightly larger and thicker then the non VM arm. I was also told that mine was with me at birth but it didn't become symptomatic at all until about 8 or 9 years old and then went undiagnosed until Jan. of 2005. It was also said to be an intramusclar hemangioma, the actual term they used was canverous hemangioma. So I was set on a mission to find out all about what I had which led me to here and a few other sites, all were very helpful. I was then sent for MRIs,CT Scans and an angiogram/arteriogam. After that the interventional radiologist who did the angio/arterio said aside from the pain and swelling to just leave it be, as I couldn't have it removed without losing the function in my arm, or dying.
What I did was took all my medical records and sent them to a doctor who is highly recommended in the vascular anoamly world. And have since had 2 treatments of sclerotherapy with him. As for how it felt, it wasn't too bad we travelled out of state for treatment and the day I after treatment we went sightseeing, and I could tolerate the pain with a bit of motrin and didn't need the vicodin that was prescribed. The second treatment was a bit more painful and it caused more stiffness then the first did, and I can no longer totally bend my arm.
I did experience numbness, but that was prior to the first treatment when my arm was at it's worst!! I looked like I had a prosthetic arm as it was so swollen and waxy looking as the skin was strecthed beyond belief. And the numbness was from the pressue put on the nerves in the arm, which could also have been caused by the VM as well. I occasionally have tingling in the arm but I am not sure what is causing it. I also need more treatment but my job will not tolerate be leaving for 3-4 days every 6-8 weeks as that is the preferred time frame between treatments.
I hope I have answered your questions, and if you have any others post them and I will try to answer them as best as I can!
Last edited by KristieinStMarysGA : 05-31-2006 at 10:48 PM.