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

Posted by pauldandurand @pauldandurand, Mar 28 10:00am

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.

arcuri24 | @arcuri24 | Apr 5 1:57pm

In reply to @pauldandurand "@arcuri24 Thanks for sharing!" + (show)

@pauldandurand

Thank you. Its very cathartic to vent about what happens to us. It is also good to know that we are not alone in facing our health problems.

tomkofathensga | @tomkofathensga | Apr 5 3:53pm

get a referral to a Neurologist.

cwloeffler | @cwloeffler | Apr 5 4:21pm

In reply to @recovery1 "Acupuncture has helped me. I’m in Colorado and we have a clinic in the cancer center..." + (show)

@recovery1
I have idiopathic neuropathy in both feet. I tried acupuncture a few years ago, and it did not help at all. I'm in Colorado too. Can you tell me where you went for acupuncture? I don't know if this forum lets you give references.
I suspect that the efficacy of acupuncture depends a lot on the skill and experience of the practitioner. A skilled and experienced practitioner vs. someone who went to Bob's Acupuncture School for a 10-day course.

pauldandurand | @pauldandurand | Apr 6 3:18am

In reply to @arcuri24 "@pauldandurand Thanks for the detailed list of exercises. I, too, use a sensory ball to massage..." + (show)

@arcuri24
Sorry to hear about the unnecessary biopsy. Was that on your foot?
I had botulinum toxin injections under my toes where I have neuropathy pain about 5 weeks ago. This is the same as botox or what they call BTX-A. His objective is to reduce the pain so I can start some intensive physical therapy exercises. He wanted to do 40 injections, but I stopped it after 5 because the needle injection pain was unbearable. In any case, the area has gotten worse after that, not better. I wouldn't recommend BTX-A to anyone for this issue.

arcuri24 | @arcuri24 | Apr 6 5:53am

My unnecessary biopsy was on the left shin. The shin is a difficult area to heal because the skin is thin there and blood flow not as good as on other parts of the body. I am hoping that the ultrasound which I will go for next week will reveal more about what is going on. I am reluctant to take any form of injection. The area is sore and achy. I notice a slight swelling there sometimes. Changeable weather also making it tougher. I have to keep warm and springtime here is like a rollercoaster when it comes to weather. I do lots of exercise and I am getting red light therapy at pt. I did have a cortisone shot years ago when I had inflammation of my sesamoid bone in one of my feet. Guided by MRI image, the orthopedist gave me an injection which was painful but well worth it. The next morning I felt like a new person and the pain never came back. Everything should be as easy as that but unfortunately, there are few easy solutions and patience is really needed.

artemis1886 | @artemis1886 | Apr 6 8:32am

Neurology has specialized over the years. For 20 years saw a neurologist and then mine passed away. Some neurologist specializes in seizures, Parkinson’s and so forth. Neuromuscular Neurologist specializes in neuropathy and most people do not know that. I found out from a research neurologist in Boston whose specialty is neuropathy no one in Dallas Texas told me that. Neuromuscular Neurologist are not easy to find, Some doctors claim to specialize in neuromuscular neuropathy and you start asking questions and they do not have the answers. Look for a neuromuscular neurologist that had training during residency or fellowship.

pauldandurand | @pauldandurand | Apr 6 9:43am

In reply to @artemis1886 "Neurology has specialized over the years. For 20 years saw a neurologist and then mine passed..." + (show)

@artemis1886
Thanks. That's good to know.

recovery1 | @recovery1 | Apr 6 12:11pm

In reply to @cwloeffler "@recovery1 I have idiopathic neuropathy in both feet. I tried acupuncture a few years ago, and..." + (show)

@cwloeffler I have several friends who are qualified and help but my weekly treatments are at the Boulder cancer center. They have a price reduced acupuncture clinic in the center itself at Boulder main hospital cancer clinic

recovery1 | @recovery1 | Apr 6 12:14pm

In reply to @recovery1 "@cwloeffler I have several friends who are qualified and help but my weekly treatments are at..." + (show)

@recovery1 also, I do think my lions mane mushroom supplements have helped my neuropathy more than a lot of things -( I have a friend who was declining fast from gulf war syndrome attacking his nervous system and I watched him use this to arrest the decline) I do a lot of high quality omega oils too.

mrmacabre | @mrmacabre | Apr 6 1:13pm

In reply to @cwloeffler "@recovery1 I have idiopathic neuropathy in both feet. I tried acupuncture a few years ago, and..." + (show)

@cwloeffler I have the same diagnosis that you've been given, and I've talked to my doctor about acupuncture more than once. He's always told me that at best it's temporary, along with not being covered by our medical insurance.
Good luck.