@victoriah Hello and welcome to Connect.

With a disc herniation, there are a few possibilities. It can herniate into the central spinal canal and press into the spinal cord (which was what happened to me) and/or a herniation can push into the space between vertebrae (foramen) where the nerve roots exit the spine to go to the body. That causes predictable pain because of where those nerves travel in the body and pain can be felt anywhere along the path of the nerve. In the case of spinal cord compression, it depends how the cord gets touched as it floats and moves in the spinal fluid with body movements. Herniations cause inflammation and can cause the growth of bone spurs alongside them. I had bone spurs (osteophytes) surrounding the herniated disc material. As this continues to grow, it can cause a tethered spinal cord and compress it which can cause permanent damage as nerve axons in the cord start to die and dissolve. That can show up as a white mottled area within the spinal cord on an MRI. My MRI did not show permanent damage, but there can be myelopathy that does not show up on imaging.

I had pain all over my body (including arms and legs) that seemed somewhat random, and I could change where it was by changing body or neck position, or laying down vs sitting or standing. I had weakness in my arms so that driving or pushing a shopping cart caused extreme fatigue, and I would have to take a nap afterward. I didn't have stenosis in the foramen, but because my C5/C6 had collapsed 50%, the space was smaller and if I side bent my neck, it caused sharp burning pain because the bones were contacting the spinal nerves there. If you read this discussion from the beginning, there is more detail about my symptoms.

I had muscle spasms that were affecting spinal alignment on top of the collapsed disc and causing vertebrae to be independently rotated or tilted slightly which caused lots of muscular headaches on the back of my head. I also have thoracic outlet syndrome (TOS) which causes compression of nerves and blood vessels between my collar bone and rib cage, and this affects rotation of vertebrae because one side of my neck is tighter. This also caused misalignment of my jaw, and that did cause some ear pain when things were misaligned. This was enough to cause vertigo a few times which happened because C1 & C2 were getting rotated and stretching an artery that travels inside them. If there is instability (or listhesis) that causes vertebrae to slip past each other a bit, it can add to the problems. I had 2mm of slipping and experienced intermittent symptoms when it was displaced and out of alignment with uneven gait and bladder urine retention. Those were early signs of dysfunction that would have progressed, as incontinence can result from spinal cord compression, and that can become permanent if decompression surgery is not performed.

In my case, the surgeons (before I came to Mayo) were confused by my leg pain, and all over body pain. That raised red flags to look for other problems as a differential diagnosis for an inflammatory problem like MS. I found medical literature with cases like mine that called this "Funicular Pain" and I found that literature because I looked up that term after seeing it in some medical literature from a surgeon (Jeremy Fogelson) at Mayo. I asked him for help, and had surgery at Mayo that resolved this.

What helped me a lot in understanding all of this was working with a good physical therapist who also did myofascial release to release overly tight tissues and muscles. I had been treating the TOS with her as all the spine related symptoms developed, and I charted the progression on body diagrams.

I also jumped through many hoops only to be told that the surgeon didn't know if surgery would be good or bad in my case. That is when I contacted the surgeon at Mayo, and there were no more hoops... just an answer and an offer for help. I was also sure that I was having funicular pain and I knew that this was understood at Mayo. There are no diagnostic tests for it, and the proof is when decompressing the spinal cord fixes it as it did for me.

Are you considering getting some other surgical opinions? I understand how frustrating that is. There is a right time for surgery, and waiting too long can cause permanent damage. Some surgeons are motivated by money and will operate too soon. Sometimes a person can go years without symptoms, and discs also shrink as part of aging. That affects any damage that may have happened with injuries. For me that took about 20 years after a traffic accident to cause spine deterioration. My surgeon at Mayo was #6 and he was the only one who fully understood my symptoms. If you wanted to seek an opinion at Mayo, it's best to check if they accept your insurance which you can find at this link (or call them)
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance
If you wanted to contact Mayo to seek an appointment at any campus, you may use this link, and they will call you back.
http://mayocl.in/1mtmR63
Have you have any second or third opinions, etc? It's a big decision, so get as many opinions as you need to make a good educated choice.