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.
Hey, had similar, shoot me a message on here and we can talk, but you’d need a MRA done to see what’s going on down there, any residual AVM and stuff, etc.
My AVM was pressing on my sciatic nerve I think, had severe pain until embolization with onyx-18 and coil, that fixed it, only 1 procedure luckily, I had pain for a month after, took prednisone- a steroid pack for a week, and all pain was gone.
Best of luck and reach out to me!
Hi Hasbund, Seeing I don’t know about emolizations of pelvic AVMs I’m really just welcoming you here and trying to empathize. I’m not sure what your pain severity is like. I had a big bleed when I was 14 and gran mal seizures ever since. I know they were very painful but the memories are all but gone. Hopefully yours will fade into a distant memory very soon.
I’ve had doctors all over the spectrum. It’s the uncommunicative ones that drive me nuts. Unless you really really trust her, I’d say move on. I’m a retired lawyer and in law it is an ethical/professional duty to communicate in a timely manner. That’s your right. Best wishes, Greg