@ralphysmom

I was a spine surgery patient at Mayo Rochester with Dr. Jeremy Fogelson for spinal cord compression in my neck. I had spondylosis at C5/C6 like you, and my disc had collapsed by 50% and had 2 mm of retrolistesis or backward slipping of C5 over C6. I had lost the normal lordotic curve in my neck. My symptoms first began when I noticed that if I turned my head, I got a pain that felt like something was biting my ankle, and when I straightened my head, it went away. It was completely reproducible. Within a year, I was having random pains all over my body, and they changed locations when I changed either my neck position or body position such as laying down vs sitting or standing. It took 2 years and seeing 5 surgeons before I came to Mayo, and all of them missed the connection of my all over body pain with my spinal cord compression.

The spinal cord floats in spinal fluid inside the spinal canal, essentially a tube within the spine, and the cord has to move to accommodate different neck and body positions. The movement of the spinal cord within the canal can put it in contact with things that don't belong like bone spurs in my case. Toward the end of those 2 years, I had MRIs that showed my bone spurs had doubled. They were growing around the extruded disc material because of the inflammation caused by the rupture. Slowly this creates a tethered spinal cord and affects everything below that level that is specific to the areas of the cord that are compressed. Right before I had spine surgery at Mayo, if I bent my neck forward, it sent a big electric shock down my entire body. What was happening was I was bending the spinal cord forward across the bone spurs and causing the shock. I also had retention in my bladder that was intermittent. My physical therapist would realign my neck as best she could, and when the muscle spasms moved it out of place again, I had the returning retention in addition to walking with a limp. I couldn't control that because I didn't have the muscular strength to overcome it unless my spine was aligned in a better position

I had what was call "funicular pain" that was caused by spinal cord compression, and that is what was missed by all the surgeons except the surgeon at Mayo who performed the decompression with an ACDF. One of my neurologists said that there can be changes that show up in the brain with MS. One of the surgeons who misunderstood my symptoms was suggesting MS as what they call a differential diagnosis which means it has the same or overlapping symptoms making a correct diagnosis more difficult because it can be easily confused. I had done all the tests he wanted over 5 months time, and then he refused surgery stating he didn't know if it would make me worse because I may have an inflammatory problem like MS. He suggested a spinal tap. Nope, I did not do that, I just found another surgeon at Mayo who took me as a surgical patient.

When I was considering Mayo, I read the literature of surgeons I was considering and I found a paper co authored by Dr. Fogelson that mentioned leg pain from cervical stenosis and the term "funcular pain". When I looked that up, I found medical literature with cases similar to mine, and I knew I had found a surgeon who would understand all this stuff, so I hired him for the job.

Here is the literature about funicular pain which was described as a rare presentation of symptoms at the time which was the turning point for me.

Have you been diagnosed with MS? On your MRI, can you see any space around the spinal cord at your C5/C6 level? Usually the space is white on the MRI. Spinal cord damage can show up as a mottled whitish area inside the spinal cord. Surgeons should not be waiting for that to to happen before they intervene. That represents nerve axons that have died and dissolved, leaving spinal fluid in their place. Correct interpretation of MR imaging needs to be made by a specialist such as a spine surgeon, neurologist or radiologist and must be diagnosed by a medical doctor trained in that area.

You may want to chart your pain and numbness on a body diagram and date it so you will know how it changes and how fast it progresses over time. I did that, and ironically, it scared a surgeon out of helping me. I still showed that to the surgeon at Mayo, and he did help me and offered surgery at my initial consultation.