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AVM Survivors Network

AVM RT leg


#1

This is a side view of my AVM. When this was taken I didn’t know that my AVM had wrapped around my femor bone and was slowly sucking the oxygen out of it and destroying the bone. A few months I broke my femor and have been in the hospital in traction for a month do far. Another 3 months is expected and still my dr’s don’t believe it will work. My bone needs to grow and there are no answers for that. Amputation is being talked about but I can’t imagine that. Does anyone know a dr that could help fix the bone and work on my AVM at same time? Anyone been to John Hopkins for AVM? Sorry for writing so much but I’m at my wits end. Thanks. Jay



#2

Have you ever heard of Dr. Rosen at Lennox Hill Hospital in New York? Not sure if he could help you with the bone stuff but my avm is in my left leg and he has helped me alot. I bet if he can’t he could help you find another Dr.
BLESSINGs!!!
Will keep you in my Prayers!!!


#3

I too have an AVM throughout my tibia and femur. Have you found treatment yet?