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AVM Survivors Network

Suggestions for AVM Extremity Specialist in Maryland?

I have long been quite fortunate with my right arm AVM. While it extends from my shoulder through my elbow, my symptoms were typically minor discomfort and a permanent slight range of motion restriction. As a result, I have never sought out a specialist since I was first diagnosed at Boston Children’s back sometime around 1999 - 2001. I have simply avoided heavy lifting or similar strenuous activity with my right side that would cause my arm to “lock up” with serious pain.

Unfortunately, yesterday I must have tweaked something, as now I can’t even lift my arm above my shoulder without that unbearable lock up pain. I have to physically move my arm down with my other arm for the pain to cease. I suspect part of my AVM may have shifted in my arm or shoulder, and is now being impinged by movement that did not previously cause a problem. I have had bad soreness before from overexertion, but this is something new.

Most of the experts I have found online deal with brain AVMs. I am also hesitant to see anyone labeled as a neurosurgeon because I wonder whether invasive options are their most familiar avenue, while I suspect something similar to a closed reduction of a fracture is all I need. Being 45 minutes from Baltimore, I figured Hopkins would be my best bet, but there again they seem to focus on brain AVMs, not extremities. Does anyone have any recommendations for this area? New imaging should be sufficient to confirm or disprove my suspicion and we can go from there, but I find it hard to trust strangers just because they are a doctor.

Have you consulted with anyone at Johns Hopkins yet? Neurosurgery departments also have doctors trained specifically in endovascular surgeries.

You need an Interventional Radiologist. Robert Rosen MD is known for evtremity AVMs. Baltimore is not that far from Lenox Hill in NYC. Check out birthmark.com. do you still have pain a month later? Sometimes I get wks of worsening pain and it is inflammation from movement.

Both,

Consider joining the @Extremity group. Members get an email about new questions, so can stand together better.

Very best wishes,

Richard