@upnort You mentioned a lesion on the spine. Is there a physical compression of your spinal cord somewhere? Is there a possible surgical correction that could be done? I am a Mayo spine surgery patient for cervical stenosis. My reports say I had mild myelopathy, and it never showed damage to the spinal cord on imaging. The opinions I had from the neurologist and the spine surgeon at Mayo were a little bit different. The neurologist saw it as not that bad in terms of a deficit, but he did recognize the thoracic outlet syndrome that I have , although he said the surgeon may look at this and say something else. The neurosurgeon did offer to fix the compression, and having that surgery changed my life. I do know that thoracic spine surgery is more complicated because of the lungs and many spine surgeons don't operate on the T spine, so you would need an opinion from a deformity specialist who takes more complicated cases. My Mayo surgeon, Dr. Jeremy Fogelson would be a good specialist to see with your concerns. If you have not consulted a surgeon, it might be something to consider. Spine surgeons usually have a preferred neurologist they like to work with that they choose for the patient as was the case for me. Even though I had neurology tests and reports before I came to Mayo, they did their own exams as requested by the surgeon.

I understand your frustration. I was misdiagnosed by 5 surgeons before I came to Mayo. I found medical literature with cases similar to mine, and when I requested to come to Mayo, I sent copies of that literature in with my imaging. I found that literature by looking up terminology from another paper. I also watched a lot of online videos from conference presentations by spine surgeons. The spinal arteries feed the spinal cord, and perhaps they are looking for a problem in circulation supply. This supply can also be affected by a misalignment of the bones of the spine. For example, Bow Hunter's syndrome happens when the upper cervical vertebrae stay rotated from turning the head and stretch the vertebral artery as it also sends blood supply up to the brain. When the person looks straight ahead, these vertebrae stay twisted and compromising the blood supply.

Are there any notes on your reports that indicate a structural issue or misalignment? Has your entire spine been imaged with an MRI? You can have problems in different areas, and maybe they are only looking at one place. Sometimes having the spinal cord being touched by something at 2 different levels causes confusing symptoms. The spinal cord is very organized with different functions in different areas. For me, the compression in my neck caused pain in my legs and entire body, and when muscle spasms pulled my neck out of alignment, my symptoms got worse. I had a bulging lumbar disc that was asymptomatic until I had compression in the cervical spinal cord. It did progress to some numbness and tingling in my lower legs, but surgery fixed that by uncompressing my spinal cord.

I can help search for some research in literature if I knew a little bit about the details in your reports. Don't post them, but are there descriptions of the spine and affected levels that you can share? I do know that spine issues are tricky to diagnose and they have to rule out peripheral nerve problems and figure out if symptoms are coming from the spinal cord, the nerve roots, or any place along that nerves path through the body. I am told by my physical therapist that with aging, nerves wear out and people develop neuropathy. Another possibility with peripheral nerve issues is that they can be compressed by overly tight muscles that change the alignment of bones, tendons and ligaments. The nerves pass through very small spaces around or between them. Myofascial release helps get the body realigned by releasing that tight tissue. For example, my pelvis can go out of alignment when one of my hip bones pushes forward. When that happens, I get pain down my leg, low back and groin until I release the tight muscles on the inside of my hip bones by laying on something that will press into it. I put a lot of information about MFR into the discussion that John referenced. That can help if it is a physical problem. MFR can also help with spine alignment which in turn, can possibly lessen symptoms related to that.

I spent 2 years looking for a surgeon to help me while I was just getting worse. I know how frustrating it is, and I knew how my symptoms were connected to my spine problem because I was working with a physical therapist and my symptoms were reproducible with a change of spine position, still, none of the first five surgeons believed me. I had been tracking the progression on body diagrams.