@lineage Wow! Your story is similar to my story. Thank you for writing about it in great detail. As I read your history, I kept saying to myself, check for cervical spinal cord compression. I was glad to see that your doctors did this, but when they found some cervical involvement, they stopped looking, and they didn't know what to do with those results. Your doctors kept on saying they didn't know if spinal decompression surgery would help you. They are afraid to try to help you because they cannot connect your symptoms with your imaging.
Here are some similarities in our cases. I had cervical cord compression because of a collapsed C5/C6 with a disc osteophyte complex (bone spurs), and I have a bulging lumbar disc. It may be L3/L4, but I would have to check my records to say for certain. Thisa lumbar vertebrae clicks on rotation, and I had forgotten about it. I was turned down by 5 spine surgeons who said similar things to me. The symptoms you listed are the same as with spinal cord compression and your doctors admitted that. Here is what they seem to be missing. When you move or change position, your pain changes location. That was true for me too. At the beginning, if I just turned my head, I turned a pain in my ankle on or off, and that was reproducible. I told all the surgeons that, but none paid attention to it. Your spinal cord floats in spinal fluid in the spinal canal. Because your spine is mobile, if you bend, the cord will also bend and slide within the canal. Now consider what happens if the cord is compressed anywhere… it is tethered by the compression and gets stretched or further compressed by your spine movement, and if you have a slipping of vertebrae, that canal changes shape effectively getting smaller. I had pain all over my body caused by spinal cord compression. I also had bone spurs raking the front of my spinal cord as I moved. I had a diagnostic cervical spinal injection ordered by a surgeon, and for 5 days it took away ALL of my pain everywhere in my body. As the pain returned when the steroid wore off, I charted where it returned and what type of pain it was for both a standing position and lying on my back and there were differences. When I shifted position when laying down, my lumbar spine cracked and stopped the leg pain I had instantly. I charted this for a few months and it progressed and got worse. What I was seeing was a gradual return of the my same symptoms that I had immediately after the whiplash from the traffic accident that had happened 20 years earlier. Twenty years earlier, I had sciatic pain and even some difficulty walking correctly. I now had gait imbalance and walked with a limp that was intermittent. When my physical therapist realigned my spine, I walked normally again until another muscle spasm in my neck moved my vertebrae increasing the compression on the cord and I walked with a limp again. I had 2mm of retrolisthesis (backward slipping) of C5 over C6. If the spine injection had not helped me, the surgeon could have said that the pain was not spine related, but I was never given an opinion about why the injection DID help me temporarily. I think he did not know why and avoided the issue. When I saw this surgeon a few months later with my charts that showed pain all over my body, he remarked that I had pain in every dermatome and this could be an inflammatory problem like MS, and he didn't know if fixing the bad disc would make me better or worse. When I developed vertigo and told his nurse about that, he declined to offer surgery and told me to stay in physical therapy. A few months later if I bent my neck forward, it sent a big electric bolt shock down my body.
I have a biology science background and had worked in neuroanatomy research at a university, so I was familiar with scientific publications. I was reading everything I could find about spine issues, and I read the publications of spine surgeons I was interested in seeing for an opinion to see if they would be a good match, and I was turned down so many times, I would pick out the next surgeon just in case things didn't work out. After 5 refusals, I started looking at Mayo surgeons, and I read a paper from a surgeon that mentioned a term called funicular pain. When I looked that up, I found medical literature about "rare presentations" of symptoms of cervical spinal cord compression that were very similar to my case. One of the big clues was the spinal injection I had that took away all my pain; that was also true for these other cases. It is something can not be proved unless surgery is done that fixes the pain by decompressing the spinal cord. The case studies talked about leg pain being caused by spinal cord compression and that it could change the location of the relayed pain to unexpected areas of the body. If the patient had an asymptomatic spine issue, and the cord is also compressed in another area, it can cause this pain to be referred to another location. You have that in common with me with your lumbar/sacral issues. I wanted to bring this new information to the surgeon who had just turned me down and tried to enlist the help of the other doctors at that institution who had evaluated me, and none would help me. No one wanted to point out what was missed by a highly ranked surgeon. My only option was another opinion somewhere else, so I contacted the surgeon who's name was on the paper that lead to my discovery. His name is Jeremy Fogelson at Mayo Rochester, and I sent the new medial literature I found to him with my request for an appointment. If you can come to Mayo, you can save yourself a lot of time and frustration. Cervical spinal cord compression can cause incontinence which can become permanent if there is no decompression surgery. I was warned about this by the doctor who did my spinal injection. I think you are on knocking at that door with your symptoms.
My surgery at Mayo replaced my disc with a donor bone graft and was done without hardware. The surgery resolved ALL of my all over body pain. I knew this would happen even though the doctors could not promise this. There is no test to confirm funicular pain, except the cervical spine surgery that corrects it.
Here are some links and the medical studies I talked about. You will need to advocate for yourself and with doctors who understand this funicular pain. I highly recommend by neurosurgeon, and I know he will understand these issues. My knowledge of this comes from my experience, my biology background, from working with a great physical therapist, from reading literature, and from watching surgeons online presenting spine cases for neurosurgery conferences, and my own troubleshooting, and even my 3 dimensional understanding for the body because I am an artist and have studied anatomy. Let me know if I can be of further assistance. You will need to interview doctors in order to know if they understand funicular pain or see Dr. Fogelson who is one of Mayo's best. I can't diagnose this, but I do believe that your case and mine are very similar. Surgery gave me my life back. It was a big step, and I was on my way to becoming disabled without it. Your doctors are not thinking outside of the box and are afraid to risk their reputations on a possible poor surgical outcome so they can't help. You really don't want a surgeon working on you who doesn't understand the problem, so you'll need to keep on looking for a qualified opinion.