Hi, my name is Kristin and I am 44 years old with diffuse AVM from the mid upper left arm down to my thumb. I have had what I now understand must have been AVM in my left arm since childhood. When I was in grammar school I developed two tumors on my tendon sheaths of my wrist that were removed, but had a high recoccurance rate. I started feeling pain in my arm and my veins started to show abnormality around the 6th grade. Around this time, I started developing limited mobility in my joints in my left arm which has gotten progressivily worse. Now my elbow is locked basically at 90 degrees.
The root of all these problems was always couched to me as lymphatic malformation. I was a patient of a well known orthopedic/oncololgy specialist in Boston, but we adopted a wait and see approach. I think this was actually good as I would consider the vein problem as a level 2 for many, many years.
I am now in LA and in the last couple of years I started noticing the veins becoming worse, so I have engaged a new orthopedic/oncology specialist (they deal with other soft tissue abnomalities - not just cancer). He has sent me to a bunch of specialists, including an ortho elbow specialist, vascular, and now an oncologist. I am a little freaked out because there is discussion of using a targeted cancer drug called votrient, as well as embolization. This drug seems very harsh and I am inclined not to do it. That said, I have developed a vascular bruit in my wrist over the last year and a half and I am freaked out that the vasular problem seems to now be getting worse for the first time in years.
This is not even getting into the ossious deformity in the elbow socket. They are looking at the bones and there is as possibly of doing an elbow surgury to fix this. I am concerned though that the surgery could make the AVM worse. Has anybody had any kind of lathroscopic surgery on a limb with AVM?
So my questions:
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Has anybody had targeted cancer therapy drugs to treat AVM - if so which ones? I was orgiinally sent to the oncologist to find out about MEK inhibators, but the oncologist said that was only an option for a cranial AVM because that is life threatening, now he is talking about Votrient.
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Has anybody had a surgery for a joint on a limb with AVM? What was the result?
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Is anybody else being treated by ortho/oncology specialists.
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Does anybody have a recommendation of an AVM centric specialist in Los Angeles?
Thanks!