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Spine conditions: Told I would not walk without surgery

Spine Health | Last Active: Feb 13 11:56am | Replies (63)

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@annie1

My symptoms are 80% in my legs, my calf muscles throb all the time, worsening after I walk even a few minutes. I also get severe cramping in my calf muscles. The thing that worries me is that my gait has changed and my pelvis seems crooked. I was a dancer so I feel these changes acutely.
I'm a bit angry with Mayo because I asked to be seen there and they turned me down giving no reason and when I asked they cited some legal reason that they didn't have to tell me. Maybe I could approach them again.
As far as PT, I haven't found any that do quality work like what you described except one who dosen't take any insurance. Where do you live if you don't mind my asking ?
You are so knowledgable. Are you in the medical field yourself ?
Thanks for all your help and I will try to get that book you mentioned.

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Replies to "My symptoms are 80% in my legs, my calf muscles throb all the time, worsening after..."

@annie1 I just found this post and didn't know you had been turned down by Mayo. I know that is hard to be turned down because I was turned down 5 times before I came to Mayo because the surgeons just didn't understand my case. My gait had also changed because when muscle spasms were shifting my cervical vertebrae around, it put pressure on the spinal cord and affected my legs. When my PT realigned my neck, I could walk normally again and she was also correcting my pelvis alignment.

If you wanted to try again in the future, first, I would check if you have insurance they accept because that is a reason for denial. Here is the Insurance and billing page for Mayo.
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance

Sometimes patients apply again or apply with the recommendation of their doctor. You may be successful at another time. It may be that the department you are applying to has no more capacity to accept patients at this time. You may be more successful applying to another department. I do hear that neurology gets many more requests than they can handle because of so many patients with neuropathy.

I can appreciate what you say about dance and how you know your body. There are pelvic dysfunctions that mimic spine issues casing similar symptoms. My pelvis gets out of alignment and I have worked with my PT on this with her doing myofascial release. It does cause back pain when it is out of whack and I know some things to do to help myself when I can't see my PT. Having my pelvis go out of alignment does also send sciatic pain down my legs, and that resolves when I get it straightened out.

This article has a lot of good information:
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

This is our discussion on Myofascial Release and it has helped me a lot.
Neuroapthy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You can search for an MFR therapists at this link. Forgive me if I've mentioned this before as recommend this a lot. http://mfrtherapists.com/

My PT is in northern IL and does take insurance like Blue Cross and Medicare and she has a traditional training plus the myofascial release certifications. She knows how to code the visit so insurance will accept it. She may use neuromuscular reeducation, I don't really know, but she knows what to do to keep insurance happy.

I don't work in the medical field, but I did consider medicine as a career and earned a pre-med biology degree. I then worked in university research for a neuroanatomist who was publishing research in journals. When I became a spine patient, I was able to understand medical literature from my background and read a lot as well as watching online spine surgeons presentations at spine conferences. I struggled for 2 years trying to get a surgeon to help me and in that time, I learned a lot. I got all my medical records and looked up everything, so I knew how the doctors were getting side tracked and missing the correct diagnosis. I found my correct diagnosis in medical literature right after being dismissed the 5th time, so when I requested an appointment at Mayo, I sent that literature in with my request asking if my case was like this, and I was accepted at Mayo, and right about my diagnosis because surgery fixed the problem.

If you can find a good MFR provider, they may be able to help resolve some of the physical issues. Surgery is a very big step, and I knew I was there because I was loosing muscle mass and coordination in my arms and shoulders and was so weak that after pushing a shopping cart at the store, I had to take a nap in the car before I could drive myself home. Driving was also exhausting. My MR imaging showed spinal cord compression from stenosis with a ruptured C5/C6 disc that had grown bone spurs in the spinal canal that was pressing on the spinal cord.

Jennifer