AVM of Right Foot

[AmyG]

I am 38 years old and was born with an AVM in my right foot. My parents were told when I was 6 weeks old that I had an AVM and would require surgery in the future. The doctors never gave them any indication of what my future would hold. At 11 years old I began having a lot of trouble with my foot. I had constant pain and ulcers. My parents searched all over the US for help. I began treatment at NYU Medical Center in 1987 by Dr. Robert Rosen. I had several embolizations over several years with little help. I had two toes amputated at two different times trying to save my foot. I got married and had two children; something I was advised not to do. During my two pregnancies, my ulcers and pain went away! Within weeks of giving birth, the pain and ulcers returned. I can not remember how many treatments and surgery I had. I, too, had to have knee and ankle surgery when I was 13 to stop the growth of my right leg. On my 30th birthday, my husband took me to Las Vegas for a vacation. I spent the entire time in the room because the pain was so severe that I couldn't leave the room! I decided then that I was going home to find a doctor to amputate my foot. I was told that for the best fit of a prosthetic, I should amputate 4 inches below the knee. I agreed and had the surgery 5 weeks later. It has been 8 years now and I couldn't be happier. Two years after the amputation, I ran the Indianapolis mini-marathon (13.1 miles). My life is no longer filled with doctor visits and surgeries, pain medication and antibiotics! I am able to be a mother to my children and have no physical limitations. I am not recommending amputation to anyone. It is a very personal decision. One that I made after years of suffering. I came across this website while helping my daughter do a research paper on AVMs. I was amazed to find these stories that were so similar to mine. I wish each of you the best in your journey.