Many neuropathy issues, so why so few doctors who know?

@pauldandurand, I can understand just wanting to find a way forward and get started on a treatment that provides some relief. I don't have any experience with surgical complications from spinal surgeries but @jenniferhunter had a Mayo surgeon that really helped her and she may have some thoughts or suggestions to share with you.

In your previous discussion you mentioned post-surgery scar tissue encased and tethered the L5 root - https://connect.mayoclinic.org/discussion/foot-numbness-and-pain-after-l5-s1-fusion-anyone-dealing-with-this/. Did your second surgery fix the area with the scar tissue?

@johnbishop Thanks for your reply. I will reach out to Jennifer. The surgeon gave me the impression the second surgery might help improve the foot problem with relieving pressure and if not, it wouldn't make things worse. I trusted him. Unfortunately, the foot became worse within a week after the second surgery and has gotten worse over time. To add to the foot problem, the back became a new issue as the pedicle screws loosened and the disc hasn't fused after 14 months. My advise to any friend in the future is to never do back surgery or at least try PT for six months first.

@jenniferhunter
Jennifer,
I don't know if this is the way to connect. I don't see a way to send a direct message to a member, so posting it here.
@johnbishop suggested to reach out to you for a name of a Mayo surgeon you had good success with. I'm not looking for surgery, but maybe some direction.

Thanks,
Paul

I don't know if it would have helped, but did any of your surgeon/s use a nerve monitoring service during the surgery?

After (right after) my spinal cord surgery, having had a donor disk put in also, it started my eight year battle with peripheral neuropathy. No one knew what to do. I have tried numerous medications as well as numerous vitamins and am now going to my new physician for Vitamin B 12 injections. No help.

I don’t know of any physicians I have seen who know anything. They give one medication after another without helping me. What to do???

Hope you find relief. The only thing that help me a very little are the massage boots my husband gave me and I wear when I am not exhausted to use them. Work to put them on. But greatful for!

I’m just very tired.

@bajjerfan
I don't think so. They never mentioned it to me. Thanks for pointing this out since Intraoperative neuromonitoring (IONM) is totally new to me. It looks like it's more commonly used for complex spine surgery, but not the more routine ones. If I would have known about this in advance, I would have requested it for the first surgery and demanded it for the second surgery because of my conjoined root nerves and having them damaged by the first surgery. I hope others reading this will consider requesting before surgery. Should be standard in my opinion. (I would gladly pay extra for it if needed.)

@weinham007

Sorry to hear you have similar issues. What kind of symptoms do you have with your foot? For me, it's weight-bearing pain mostly under the three smaller toes, the ball of the foot, and along the right edge of the foot. I also have a loss of sensation in that area. That's S1 nerve territory but because of my dual L5 nerve construction, neurologists believe that part of the foot is managed by the L5 in my case. When I describe the symptoms I say it's like rolling up a cardboard pill box and sticking it under the ball of the foot and then walk on it. I tried that with left shoe, the good foot, and I was able to simulate the same sensations as my bad right foot.

I have concluded, or at least so far, that there's no focus on post surgery nerve damage. A couple surgeons I met said it's very common and they have patients with similar post-surgery neuropathy problems, but they place the blame on the pre-surgery condition (i.e., disc hernia) not the surgery itself. I could be wrong, but I'm guessing surgeons wouldn't record accidental nerve damage and most of them may not even know they did it.

The reflex to trial gabapentin, pregabalin, duloxetine, etc. is understandable. These are the only tools available in a brief outpatient consultation that require nothing from the surgeon beyond writing a prescription. The evidence on their efficacy for post-surgical neuropathic pain is genuinely modest, as both you and I have experienced.

The real gap is at the handoff point. When surgery ends and no further surgery is appropriate, there's no mechanism to transfer the patient to a specialist with the training, time, and reimbursement model (financial incentive) to manage what remains. Physical medicine and rehabilitation physicians are the closest structural equivalent, but rehabilitation with regular physical therapy wasn't built around post-surgical nerve injury rehabilitation either. Sigh.

Why so few doctors know?… There are so few docs in neurology & likely fewer in research. Treatments generally require millions of dollars for research, then again for clinical trials. Neuropathy affects primarily old people, fewer than a dosease like cancer or spinal disorders….and now our government agencies are hatcheting many research programs. So I understand the lack of interest & knowledge.
Fortunately my neuropathy (feet only) is relatively mild & very manageable with a few strategies. At rarer times it is maddening. I have wondered recently if acupuncture would be useful. After I read about something called “peripheral nerve dysfunction (which affects body temperature regulation & other systems) that seemed the next approach I’ll try.
I’ve done 1 course of Tx with a PT using a device called WYNBK (“win back”.) It’s not FDA approved or reimbursed by insurance (self pay.) I didn’t notice any improvement with the 1 course. But if I did 10? ($4,000) Who knows. I truly feel for younger people with this, and those whose neuropathy is more severe. Our bodies are such a magical mystery! I bet what we know is just the tip of a great iceberg. Best wishes to you.