I have an AVM in my arm. I had my first surgery four years ago, they removed a fistula and an aneurism, as well as most of the AVM and all the mess it caused. I live in far northern Maine, where the doctors have never heard of an AVM before, and are not at all familiar with it. Up here, the doctors just thought I was over-reacting in order to get my insurance to cover cosmetic surgery. The bumps and purple veins were quite a sight. I drove 4 hours south to the closest real medical center in when my hand turned purple and the pain was more than I would ever care to handle. That’s where I met the hand surgeon who saved my hand.
Here I am 4 years later and a few months ago the AVM seemed to grow back over night. My arm from my wrist to my elbow became so large. At first it was swelling, but then it turned hard and the arteries started sticking out again. It’s not swelling, it’s new growth. I fought with my doctor up here to get him to make a refferal for me to see the surgeon in Bangor. The surgeon saw me a month after it started bothering me and told me it had to be removed again, as soon as possible. Because I needed such a large slot, he scheduled it a month away. Having to wait that long was so hard. I even started seeing a therapist to help me cope.
Here it is a month later, and the office called this morning. A trauma came in and the surgeon has to reschedule me. He is leaving for vacation the first of next week and will be gone for six weeks, so now I have to wait another two months.
My doctors up here are telling me that I should be able to wait, and are telling me to stop over-reacting. They told me that to find another hand surgeon would take weeks, then it would take weeks just ot get me in for an initial appointment and the whole process would take months. I called the hand surgeon back and his nurse said that he is the only hand surgeon in the state, and the only surgeon in Maine who is willing to work on AVM’s. I believe it, because when he considered having sclerotherapyu treatments done, he had to send me to Boston.
I don’t know what to do! I feel like I have nowhere to turn! My doctor up here thinks I’m over-reacting. The only doctor who understands the severity of the situation is going on vacation and leaving me high and dry! They aren’t even offering any other options! They claim they’re the only option!! I don’t know what to do! Someone, please help!