Those are all great questions @upnort. When I first read your discussion, I really wasn't sure what your main concern was. These questions spell it out specifically. If it were me, what you wrote in this post would be my next message to my care team through the patient portal. I'm tagging @jenniferhunter to see if she might have some suggestions relating to your diagnosis of progressive thoracic myelopathy.

I know my situation is not the same but I can relate to what you are feeling. I first came to Connect in 2016 after being diagnosed with idiopathic small fiber peripheral neuropathy and my neurologist told me what I didn't want to hear - there are no treatments (medications, surgeries, etc.) that will help with the numbness which was progressing at the time in my feet and legs. The numbness had been progressing starting in my toes for over 20 years before I decided to have tests done and see a neurologist because all of my primary care doctors told me the same thing when I asked if they find that I have nerve damage, what can be done? They all said nothing and I avoided having the tests to try and determine a cause. I was glad I found Connect and could learn what others with similar symptoms and diagnosis were doing to help with their condition.

@upnort I do understand your concerns. I am a spine surgery patient and I have learned a lot through my own advocacy and my science background. One way to find information is to look up the findings of the imaging report online and see if you find anything. There are videos online from spine conferences where cases are discussed and some can be accessed for free; others are limited to members of an organization. I learned a lot that way. If you look at your imaging, you can try to find the problem. Myelopathy on an MRI looks like a whitish area that is often diffuse in appearance. When you see that, it is because those nerve cells are missing. Generally speaking, the spinal cord is very limited in ability to heal, and myelopathy may be a permanent loss of function of that part of the spinal cord. There is always research being done, and there has been some success in recovery from serious spinal cord injuries done at Mayo. There has also been an apparatus that has been able to bridge the gap to send signals past a damaged area of the spinal cord to help a patient walk again.

I can’t answer what options may be available to you, but in serious cases, that is some of the work being done. Hopefully, I haven’t made you worry unnecessary. You do need an expert to interpret your results.

Can you share what the findings say on your report?