Options after open triple neurectomy + meshoma removal
Three and a half years ago an ultrasound showed two left inguinal hernias that were thought to be causing recurrent abdominal pain and I underwent “routine” hernia surgery. The pain was almost immediate, excruciating. I was lucky enough to have doctors who helped me figure out the problem, and had a triple neurectomy 18 months ago from a highly reputable surgeon who was able to extricate the PHS mesh that was entwined in nerves and blood vessels. The II and IH nerves were implanted in muscle, but I had new pain immediately after the surgery all along my hip bone, front to back, and it persisted for some time. I also still have pain in the inguinal area that varies from an ache to a burn. I am nowhere near as active as I was before the first botched hernia surgery. My pain levels are lower than before the neurectomy; that was intolerable pain. But I am still in considerable pain, all the time; my pain improvement seemed to plateau at 3.5 months after the neurectomy. I gave myself until 18 months to wait to see, and now I need to make a decision: do I consider more surgery to explore what might be going on or just learn to deal with it? A doctor out on the east coast who also has a hernia forum (who didn’t do my surgery) suggested I get input from other surgeons about a high neurectomy, higher up closer to the spine. His opinion is that it’s very risky and that only a very few doctors can perform it successfully (Drs. Chen and Towfigh). Any thoughts on this “high triple neurectomy” or any other options for those of us still in pain after triple neurecotmy + meshoma removal. For patients like me, what do you think is going on – might we have scar tissue building up, or maybe the hip bone pain suggests that the nerve(s) weren’t successfully implanted and some neuromas have developed, or something else? What should I do? By the way, I am considering starting a support group for folks who have chronic pain even after a triple neurectomy. There are arguably many of us, and perhaps we can share what works for us. If Dr. Towfigh allows this I can share this link here, but I will wait for her approval. Thanks for any advice for those of us in the unfortunate group for whom this surgery wasn’t able to completely remove the pain.
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