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Neuropathy from lumbar stenosis?

Neuropathy | Last Active: Sep 29, 2023 | Replies (75)

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Jennifer: This is so helpful. I didn’t mention that I also have stenosis at L1-L3 just not quite as bad as L4-5. They would do a laminectomy of those levels as well. Hence, the lumbar plexus complex you mentioned makes sense as I also have constant genitourinary pain and that is a nerve in the complex. I also have a history of referred pain in other instances. I do not have surgery scheduled yet. The neurosurgeon want to review the results of an upcoming EMG on my left leg. I have left knee weakness 9 months post-op TKR which could also be caused by the lumbar issues. I’m going to raise the lumbar complex and referred pain suggestions up to the neurosurgeon; I feel confident that he will consider. I’ve had other consults who wanted to do surgery and really didn’t address the nerve pain; the current neurosurgeon is concerned. Very glad your problems were eliminated with surgery.

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Replies to "Jennifer: This is so helpful. I didn’t mention that I also have stenosis at L1-L3 just..."

I pass on this information as much as I can because so many surgeons missed it with me. The best time to show them something new like this is early in your relationship with the doctor before they come to a decision about your care. Once they have formed an opinion, they wouldn't want someone pointing out a mistake or error of omission. In my case, after I found the article on funicular pain, not one single doctor who had evaluated me (and some for 10 years as a patient of theirs at that facility) would help me address this with the spine surgeon who missed it. He was a department head, and none of his colleagues were willing to tell him he'd made a mistake in judgement. That leaves a patient looking for a new doctor. Always make sure to introduce this as a question such as, "Doctor, I found this literature about a spine case that seems to be similar to what I am experiencing. Do you think this is part of what is wrong?" Let them be the brain in the room. Saying "part of what's wrong" leaves room for whatever else the doctor was thinking.

With funicular pain, there is no diagnostic test for it ahead of surgery, and when decompression surgery fixes the problem, it confirms that funicular pain was present. A clue would be if you have a spine epidural injection that takes away ALL the pain you're experiencing, it suggests the possibility of funicular pain. That was true in my case, and because the surgeon didn't understand the results, he ignored them or didn't believe me. I think it was meant to weed me out as a surgical candidate because ultimately, he suggested I may have MS and suggested testing for it. There was no indication of MS on my MRI images, and he denied surgery because he didn't know if it would be worth it because "it would address so few of my symptoms." The only truth in that statement was that he didn't know. I knew surgery would help me and it did, so I presented that information first with my request to be seen at Mayo.

Would you be willing to share how well your doctor receives this information?