Left arm AVM ~ finding a doctor

Hello everyone!
After being misdiagnosed for years and going through so much trouble, the pulsating AVM in my left wrist developed a fistula, as well as two aneurisms. My husband drove me four hours south (I live in northern Maine) before we found an emergency center that took me seriously. After five days of testing, the diagnose was made and the first surgery was done. A large cluster of veins and arteries were removed, and my arm was never the same again. It has been four years and the pain is back in full force. About a month ago, the arm started to swell up to the point of what it is now, which is twice the size of the other arm. The veins and arteries are purple and poking right out of the skin. The heaviest narcotics aren’t even taking the edge off the pain anymore. The surgeon downstate is going to open my arm up frmo the wrist to the elbow in two weeks to remove all the new growth. In the mean time, my arm and hand are completely useless.
I was sent to the Boston Children’s Hospital’s vascular anomolies clinic two years ago to see if there was anything they could do to manage the pain, but the doctors simply told me everything I was going through were completely normal and they didn’t see the need to do anything. However, I really think I need a second opinion. Living in Maine, being on state insurance, and living off one income with a husband and two children, it’s so difficult to drive to Boston and hope to get some answers. There has got to be someone I can email or something. Does anyone else live in New England, or better yet, Maine? I could use all the advice I can get at this point.
Before just a few months ago, I didn’t even know what an AVM was. I assumed it was a one time deal, and I would never have issues with my arm again. Now it’s as if reality has hit. They surgeon reminded me of what he told me four years ago, which was that surgery is going to become more and more often as time goes on. I hate the thought of that. I only hav eone blood sull;y going into my hand as it is. I have three avnm’s, one in my wrist, one in my elbow, and one in my shoulder. The one in the wrist is the one that pulsated and caused so much pain. Before it was removed the first time, you could literally touch the bump and feel the pulsating of the blood. It felt like a tiny whirlpool.

Any advice and support would help : )

~Jess

Hello,
I have had two AVMs surgically removed. One in 2009 and one in June this year and there are still some effects from both surgeries. I have Cowdens and will get AVMs anywhere and anytime. The only problem with your question is that I live in Australia and the Vascular Surgeon and Plastic Surgeon who did my ops are in Brisbane. So I really cant help with that. But I know what it feels like when you cant move an arm. Hang in there hopefully there will be someone close by who will help.

i know how your feeling i have 3 in my left arm and the pain now feels like its in the bone, looking for a new doc now pain management is not working like i hoped, hang in there