I am wondering whether anyone else has faced this development. I’ve had upwards of 25 procedures on my AVM, from sceloro’s to embo’s and two attempted resections. But my AVM is a fighter, and keeps growing back. After my last attempted resection, it was found that the AVM has encased my tibial nerve at the tarsal tunnel and into the sole of my foot, such that (as the world-class surgeons told me) it would inevitably keep regrowing.
Further, it has managed to invade the nerve itself. The doctor explained it like a box of spaghetti with about 5 strands of spaghetti in the box, and the empty space is usually fat insulating the nerve fibers inside of the nerve sheath - but the AVM has been so aggressive that vascular components have invaded the nerve sheath and replaced the fat. As you’d probably imagine, it’s not a fun time.
I have an appointment next month with the Mayo Clinic, to get scans and meet with doctors. They seem to think they can help, but my doctors (experts in their own right) are warning me that there’s nothing to be done about the level of nerve involvement. I’m just wondering if anyone has dealt with anything similar and can give me insight into their experience?
I have an extremity AVM in my right arm. I’ve had 4 embolizations & 1 went wrong. They embolized an artery instead of a vein. It was the most painful thing I’ve ever experienced. The flesh necrosed from the inside out. I am having tremors & now seeking answers from a vascular specialist. I haven’t done anything to my AVM for 16 years because of the fear. I too am afraid mine has invaded the nerves. I wish I could be of more help. The extremity AVM’s seem to be more rare & answers are hard to come by.
Wow, I’m sorry to hear that - it sounds like an absolutely awful experience. I, too, had a bad embo experience, not as bad as yours, but a new doctor was far too aggressive and I ended up being in significantly more pain post-procedure than I had been beforehand. It caused me to shy away from any further treatments for about 7 or 8 years as well, but I got another MRI when I started not being able to walk more than a couple blocks due to the pain and that’s when I discovered this development.
The interventional radiologist and nerve specialist are telling me to moderate my expectations (hard to say how much of that is run of the mill surgeon ego stuff though, hence the ask here), but I’ll follow up after these tests and consults and share what the Mayo doctors said.