@rico2 I was in a position of surgeons questioning where my symptoms were coming from and not recognizing that the sciatic pain and pain elsewhere in my body was only being generated by spinal cord compression in my neck at the C5/C6 level. I am sharing with you the medical literature that I found that changed my spine journey. These articles talk about a phenomenon called "funicular pain" or "tract pain" and there is no diagnostic test to prove that it is happening except than when you have surgery and decompress the spinal cord, it resolves the pain.

They can do an epidural spinal injection, and if that takes away the pain (temporarily), it suggests that it may be funicular pain (as stated in one of these articles). I had that experience in that an epidural injection in my neck took away all the pain, all the sciatic pian and all the body pain. Pain started comping back slowly on the 6th day after the injection, and it was back to pre -injection pain levels at about 6 weeks which is how long it takes for the body to metabolize the steroid that was injected. My surgeon could not guarantee that my C5/C6 ACDF surgery would cure this pain, but I knew that it would. I had paid attention from the very start, and my first indication of any pain being generated by my neck was when I turned my head, I got a pain in my ankle, and when I looked straight forward, the pain went away. It was reproducible and this was before the condition had advanced, so I absolutely knew my neck was causing sciatic pain. Your experience with an increase in symptoms with physical therapy is similar to mine. One of these articles relates to issues at C3.

I also experienced leg weakness and walking with an uneven gait or limp, and there was nothing I could do to walk normally. My spinal cord compression was at beginning stages and early enough that when my PT realigned my neck, I walked normally again, and my bladder functioned normally again until the next spasm. I was having trouble emptying my bladder when the muscle spasms straightened my neck and caused the vertebrae to put more pressure on the spinal cord. This was another clue that the cervical spine was causing these issues.

You might share this literature with your surgeon. Be careful in how you present them because you don't want to sound like you are telling the surgeon how to do his job. When I approached a surgeon at Mayo for care, I sent this first article with my request and wrote a letter about my symptoms, and I posed it as a question asking if my case was like this case in literature. That lets the surgeon be the expert and answer your intelligent question. The problem I had was that 5 surgeons missed this and missed the diagnosis, gave a wrong answer, and no one would help me bring this up because I, the patient, would be pointing out a mistake. It's best to ask this before the surgeon gives you and absolute answer about where he thinks the pain is coming from.

Ultimately, you'll need to decide if you want to proceed with surgery and listen to your gut feeling about your body. Your PT may have some valuable input. You may have issues in multiple places that generate pain and confuse getting a clear diagnosis because of overlapping symptoms. With your prior spine surgeries, that introduces a bit more complexity.

You may want to discuss this with @upstatephil because he had both cervical spinal stenosis and a lumbar spine issue and had surgeries on both. He reached a point where his legs were giving out under him and decided to go forward with surgery. He'll probably join this discussion since I mentioned him.

After reading this literature, what questions would you ask your surgeon? Do you have thoughts about surgery? I know that can be a hard decision to make when you have no guarantee that it will improve your condition. You may have some of your own insights that could be clues to a future surgical outcome.

Eur Spine J. 2011 Jul; 20(Suppl 2): 217–221.
Cervical cord compression presenting with sciatica-like leg pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
J Neurol Surg Rep. 2013 Dec; 74(2): 101–104.
Cervical Spinal Canal Stenosis and Central Disc Herniation C3/4 in a Man with Primary Complaint of Thigh Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3836946/
BMC Musculoskelet Disord
. 2020 May 14;21(1):302.
Funicular pain: a case report of intermittent claudication induced by cervical cord compression
https://pubmed.ncbi.nlm.nih.gov/32410709/
Spine (Phila Pa 1976)
. 1999 Jun 15;24(12):1265-7.
Sciatica caused by cervical and thoracic spinal cord compression
https://pubmed.ncbi.nlm.nih.gov/10382257/