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

Neuropathy | Last Active: Apr 6 2:30pm | Replies (51)

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Profile picture for weinham007 @weinham007

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.

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Replies to "After (right after) my spinal cord surgery, having had a donor disk put in also, it..."

@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.