Want to know if myelopathy is still a form of neuropathy

Posted by nanashelly @nanashelly, May 11, 2019

I went to the doctor and she said that she doesn't think I have sfn instead she says that I have something I think it starts with scoliosis and myelopathy. Is there anyone else who is dealing with something like this and how they?

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@lisalucier

Hi, @nanashelly - you will note I merged your post with the previous discussion you started on the topic of myelopathy. I can imagine that your pain that seems to shock in your legs, tremors, balance and incontinence would be distressing.

A few other members who may have input on your symptoms post-spine surgery include @lylafell @lourdes27 @gailb @amberheilman @wilcy @johnbishop.

Have you gone back to see the spine specialist who did your most recent surgery for a consult?

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The last time I seen him and explained what was going on with me he just looked at my x-rays and said everything looks good and dismissed me.

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@nanashelly A diagnosis of myelopathy is damage to the spinal cord. The dural covering of the spinal cord is fascia and connected to fascia. Possibly myofascial release could help if the issue is being caused by tight fascial scar tissue from the prior surgeries and if it is putting pressure on the dura. A physical therapist with spine rehab experience and expert level training in the John Barnes MFR methods would be good to consult. You can search for them on the MFR website. (See link below for information.) You may also want to consider a different surgical opinion other than the surgeon who operated on you. Sometimes when surgeons feel something wasn't successful, they wash their hands of it and dismiss you, and it would be a shame if that decided your future. I had that happen to me after a surgeon missed the thoracic outlet syndrome I had and thought his procedure for carpal tunnel syndrome should have fixed everything and he dismissed me and accused me of malingering. He wanted nothing to do with me after that and wouldn't authorize physical therapy for TOS. I had to find another doctor.

You have to advocate for yourself if you think you could potentially have a better outcome. If the symptoms you have now are from a compression of the spinal cord, it would be worth asking in there could be another solution taking into account the history of prior surgeries to the area if this is a lumbar problem. Sometimes, that is a surgical approach from a different direction. Sometimes there are also issues with nerve entrapment from tight muscles surrounding the pelvis which mimic spine problems. Physical therapy and MFR can help those as has been my own experience. I would also suggest that a spine specialist look at other areas of your spine. Hand tremors could be caused by a cervical problem, and a cervical spinal cord compression can also cause all the symptoms you mentioned... incontenence, balance issue, hand tremors as well as pain. I'll share some links in a discussion about MFR and a case study that I found about cervical spinal cord compression causing leg symptoms. I found that study right after I was dismissed by a surgeon who didn't believe that my all over body pain was caused by the compression in my neck....and it was the source of the problem. That is what brought me to Mayo for spine surgery and it fixed the problem. Here are links that may be of interest.

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3411405/
https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
https://trainingandrehabilitation.com/causes-hip-pain-how-to-fix/

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i have had severe scoliosis (they also call it complicated, which should go without saying) for 73 years with little pain for the first 65. when i was at mayo for a kidney surgery a few years ago, the doctor mentioned a badly twisted sacroiliac. i thought it was just a casual comment because in my trips to mayo, now 25-30 years ago, all they ever told me was to keep on doing whatever i was doing. when i went to my doctor about the pain, he insisted i go to his chiropractor, over my objections. the chiropractor took some pictures and said the pain might be coming from the twisted sacroiliac. he uses some silly machine which one can hardly feel, but i am standing straigh

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Hi, I have severe pain and cramping in my feet, legs, back, arms, hands, face, and head, and the teeth on my right lower jaw have gone numb and finally I am loosing hearing in my right ear lower tomes first., This mass of symptoms has been diagnosed as:

1.Rhombomyeloneuropathy
2. NIF-IgGs (neurofilament heavy and light chain) positive

Rhombomyeloneuropathy means a disorder that involves brainstem, spinal cord, and also nerve roots, and peripheral nerves. The second diagnosis has to do with the antibody found in my spinal fluid.

Anyone have any suggestions? This is myleoneuropathy from nerve degeneration rather than direct spine damage.

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