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

@weinham007

I hope the next step is not surgery. If your surgeon pushes for it, consider 2-3 other opinions.
Did they say the foot problem is from fibrosis tethering the nerve or something else? Or was the it from a nerve root receiving direct damage from a herniated disc or maybe accidently by the surgeon during the surgery?

@weinham007

The person actually doing the monitoring would have talked to you and asked you to sign an approval form pre-surgery. I had someone for both my cervical and lumbar procedures.

@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

@pauldandurand Paul, thanks for reaching out. From your posts, it sounds like your Pedicle screws loosened and your spine didn’t fuse. I am not surprised that the surgeon who operated seems to be casting this aside. Surgeons don’t want to fail or deal with something adverse. I went through this too years ago with carpal tunnel surgery that didn’t completely correct nerve pain because the doctor missed the diagnosis of thoracic outlet syndrome that causes overlapping symptoms in the same nerves. I had to go in search of a doctor familiar with TOS and they are few.

I had spinal surgery at Mayo for a ruptured C5/C6 disc with Jeremy Fogelson at the Rochester campus 10 years ago. He is excellent and is a spine deformity expert and does some extensive surgery including scoliosis. He would be an excellent consultant if you can go to Mayo.

I have read a lot about spine surgery and pedicle screws can pull out if placed at the incorrect angle or if there is poor bone density to hold them. I have only had cervical surgery and Dr Fogelson’s advice to me to avoid future spine issues was to maintain good core strength. I do go to PT and I own a horse and riding just at a walk if very therapeutic building muscle strength. It helps me maintain good posture.

The other therapy that helps me is myofascial release and that is helpful for loosening surgical scar tissue that keeps getting tight. It may be worth seeing an MFR specialist and there is a provider search at mfrtherapists.com.

What sounds concerning is if there is instability developing in your spine and how much that affects you either now or in the future. If your fusion is not fused, the hardware must be holding the spine in place and that depends on good bone quality.

Do you plan to see another spine specialist for an evaluation ?

@jenniferhunter

Hi Jennifer,
Thanks for your nice reply and for sharing your story. I'm glad you able to rid and walk for enjoyment and muscle strengthening. Doing PT is what I need to do as well. Need to find the right one.

I have seen a dozen spine specialists, mostly in Europe, but also had an assessment done by the Cleveland Clinic. At this time, most feel going in surgically will only induce more fibrosis and risk making things worse. They say changing the disc with better material for fusion could work, but it may not likely lead to less back pain. My likely scenario is the fibrosis around the root nerve is causing severe nerve problems with my right foot. I go to the gym every day and every time I do the light weights and core exercises, the foot issues flairs up more. So it's a signal that activating the core is aggravating the spine hardware issues. However, it's a conundrum because I do need to keep the core muscles strengthened. I learned from my pre-surgery spine x-ray that my bone density is below average, but the surgeon wasn't concerned. The screws are in straight, but I assume my bone density is not sufficient for them.

I will research myofascial release. Thanks for suggesting it and thanks for providing the doctor's name.

[Update after research] I looked into with Claude AI research. My fibrosis is epidural, meaning it sits inside the spinal canal, encasing the L5 nerve root against the dural surface. The spine surgery literature says that epidural fibrosis is not reachable by external manual therapies. The documented treatment approaches are all interventional or surgical. Bummer. Regarding MFR, there are no published clinical studies that documents MFR having any effect, positive or negative, on epidural fibrosis specifically. Still, it was great to learn about MFR. Always looking for options and new ideas!

@pauldandurand Paul, thanks for reaching out. From your posts, it sounds like your Pedicle screws loosened and your spine didn’t fuse. I am not surprised that the surgeon who operated seems to be casting this aside. Surgeons don’t want to fail or deal with something adverse. I went through this too years ago with carpal tunnel surgery that didn’t completely correct nerve pain because the doctor missed the diagnosis of thoracic outlet syndrome that causes overlapping symptoms in the same nerves. I had to go in search of a doctor familiar with TOS and they are few.

I had spinal surgery at Mayo for a ruptured C5/C6 disc with Jeremy Fogelson at the Rochester campus 10 years ago. He is excellent and is a spine deformity expert and does some extensive surgery including scoliosis. He would be an excellent consultant if you can go to Mayo.

I have read a lot about spine surgery and pedicle screws can pull out if placed at the incorrect angle or if there is poor bone density to hold them. I have only had cervical surgery and Dr Fogelson’s advice to me to avoid future spine issues was to maintain good core strength. I do go to PT and I own a horse and riding just at a walk if very therapeutic building muscle strength. It helps me maintain good posture.

The other therapy that helps me is myofascial release and that is helpful for loosening surgical scar tissue that keeps getting tight. It may be worth seeing an MFR specialist and there is a provider search at mfrtherapists.com.

What sounds concerning is if there is instability developing in your spine and how much that affects you either now or in the future. If your fusion is not fused, the hardware must be holding the spine in place and that depends on good bone quality.

Do you plan to see another spine specialist for an evaluation ?

@jenniferhunter It's hard to believe that any surgeon would be dismissive regarding a failed spinal fusion procedure, and would try and hand that patient off to another doctor. That feels unethical to me.
You and I have a couple of things in common, I've had my neck fused at the C5-C6 level, and then again at the C7-T1 level. I've also had a failed carpal tunnel surgery on my right hand that left my index finger and thumb numb. A second attempt to correct it also failed, so it's become permanent.

@jenniferhunter

Hi Jennifer,
Thanks for your nice reply and for sharing your story. I'm glad you able to rid and walk for enjoyment and muscle strengthening. Doing PT is what I need to do as well. Need to find the right one.

I have seen a dozen spine specialists, mostly in Europe, but also had an assessment done by the Cleveland Clinic. At this time, most feel going in surgically will only induce more fibrosis and risk making things worse. They say changing the disc with better material for fusion could work, but it may not likely lead to less back pain. My likely scenario is the fibrosis around the root nerve is causing severe nerve problems with my right foot. I go to the gym every day and every time I do the light weights and core exercises, the foot issues flairs up more. So it's a signal that activating the core is aggravating the spine hardware issues. However, it's a conundrum because I do need to keep the core muscles strengthened. I learned from my pre-surgery spine x-ray that my bone density is below average, but the surgeon wasn't concerned. The screws are in straight, but I assume my bone density is not sufficient for them.

I will research myofascial release. Thanks for suggesting it and thanks for providing the doctor's name.

[Update after research] I looked into with Claude AI research. My fibrosis is epidural, meaning it sits inside the spinal canal, encasing the L5 nerve root against the dural surface. The spine surgery literature says that epidural fibrosis is not reachable by external manual therapies. The documented treatment approaches are all interventional or surgical. Bummer. Regarding MFR, there are no published clinical studies that documents MFR having any effect, positive or negative, on epidural fibrosis specifically. Still, it was great to learn about MFR. Always looking for options and new ideas!

@pauldandurand Hi. I had a lumbar surgery in Sept 2025 and am also now experiencinf severe numbness in my right foot and calf. My numbness actually started before the surgery and was one reason I had the surgery. But six months post-surgery, my numbness remains. I stopped driving and am careful walking, especially at night or on uneven terrain. If it helps you, I'm taking the following supplements: B-12, Magnesium Glycimate and R-Alpha Lipoic Acid. I also bought a red light therapy belt which I do nightly and am doing weekly acupuncture. I'm also doing a therapy which sounds similar to MFR. I'll try Schroth Therapy too soon because I have scoliosis. My questions are: 1) Your original message said that the surgery caused nerve root damage. How did you know that? and 2) How do you know that you have fibrosis around the root nerve and that it is epidural?

@ccchang
Hi, Sorry to hear about your foot and calf numbness. It sounds similar. Do you get pain when placing weight of your foot? I have three symptoms. One is the numbness, two is occasional electric shocks lasting 5 secs to 1 min, and the third is weight-bearing pain. The third is definitely the worst and life changing.
To answer your question:
1) Prior to my surgery I had no numbness or pain in the right foot. 24 hours after the surgery, the big toe felt a little numb and then that expanded over the next couple of months. The day after the surgery the surgeon said he was surprised that I had conjoined nerves (two nerves where there should be only one). Also, he kept saying the foot issue was normal and all going according to plan. Which didn't make sense to me and I sensed he was nervous about the whole situation.
2) MRI shows that very clearly, which was pointed out to me by the radiologists and surgeons who reviewed the images.