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

Posted by pauldandurand @pauldandurand, 16 hours ago

I had a lumbar spine surgery that resulted in nerve root injury and neuropathic foot symptoms that were not present before the procedure. When I have raised this with the surgeons involved and with other neurosurgeons and orthopedic surgeons since, the consistent response has been that post-surgical nerve rehabilitation is outside their scope, and none of them could point me toward anyone who could help. A few suggested DRG stimulation, which I researched and found was not appropriate for my type of injury. The rest had nothing to offer at all. I have felt increasingly lost with no specialist and no path forward.

I am not trying to assign blame. I understand that surgical complications fall into a gap between what spine surgeons do and what rehabilitation specialists typically treat. But I need a way forward and I have not been able to find it through the specialists I have access to.

Has anyone here found a type of specialist, whether in physical medicine, rehabilitation, or another field, who works specifically with peripheral neuropathy caused by spinal surgery? Any direction would be genuinely helpful. Thanks

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | 12 hours ago

@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?

pauldandurand | @pauldandurand | 10 hours ago

In reply to @johnbishop "@pauldandurand, I can understand just wanting to find a way forward and get started on a..." + (show)

@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.

pauldandurand | @pauldandurand | 10 hours ago

@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

bajjerfan | @bajjerfan | 10 hours ago

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

weinham007 | @weinham007 | 8 hours ago

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.

pauldandurand | @pauldandurand | 10 minutes ago

In reply to @bajjerfan "I don't know if it would have helped, but did any of your surgeon/s use a..." + (show)

@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.)