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AVM Survivors Network

Has anyone experienced severe leg/buttock pain following pelvic AVM embos?


#1

So I have a large pelvic AVM (lower right pelvis) and have had 4 embolizations on it over the last ~8 months. I got the sampler package receiving Onyx, coil, and alcohol emoblizations during this time. I am about ~3 months out from my last emoblization and am having such severe pain that I can barely walk. I walk with a cane and am in severe pain constantly. The pain starts in my right buttock and extends down to my knee along the back and side of the leg. My doctor is on maternity leave at the moment and while she is working remotely, correspondences are very slow. I know I’ve read people on here with pelvic AVMs having the same type of issue. I’m just grasping at straws at this point. Has anybody had these same symptoms following embo or from a pelvic AVM? If so, what was the diagnosis? I’m just trying to get an idea of what it might be while I’m waiting on the official diagnosis from my doctor. Thank you in advance for any and all input.