First, I VERY much appreciate the input from Dr Wise Young and many others last year on the pain forum regarding advice on obtaining treatment for a degrading cervical spine primarily due to cervical dystonia for the past 17-years.
Here I am almost a year after my last C-spine MRI, and I can not get a referral to a neurologist that will address my medical issues. Re-reading the responses to my initial question really clarifies to level to which I have hit the wall with my local Dr's as to how to proceed, or more importantly, that I NEED A PLAN, as I want, and feel I deserve an improved quality of life. I am becoming more concerned about loss of function as I am experiencing short periods where I can't move my left arm after sleeping, and have been unable to move the toes on my left foot for over a year now.
None of my Dr's feel I am any risk as to loss of function due to C-spine issues, and they feel that my constant pain is something I just have to live with - meditation anyone? I also have not been told I should take any precautions regarding my spine, and I feel like I am supposed to "tough it out" but I am getting worse by the month. I thought I was pretty savvy regarding the medical community, but I feel totally inconsequential as a patient, as they just want me to go away.
Should I go outside of the insurance system and pay for a comprehensive evaluation of my dystonia spinal issues? We can't afford it (who can?), but I don't want to risk losing my mobility either. It have been recommended that I consider a cervical spinal cord stimulator but that won't stop the dystonia, so my spine will keep degrading. I just don't know where to turn.
Below is my c-spine mri from last year, and Dr. Wise Young's response.
Thanks for letting my vent. jrcmom
C3-4: Broad-based central and bilateral paracentral disc
protrusion with subtle flattening of the thecal sac and cord. No
C4-5: Small broad-based central and bilateral paracentral disc
protrusion. Flattening of thecal sac and cord. AP sac
approximately 9 mm.
C5-6: Minimal diffuse annular bulge/spur with slight flattening
of the thecal sac and cord. Mild left facet hypertrophy. No
C6-7: Small bulge/spur. Mild right foraminal narrowing due to
1. Degenerative changes as above.
Both Hipcrip and Tam gave sound advice. Let me talk about the MRI findings and some possible solutions.
A 9 mm AP (anterior-posterior) distance at C4-5 is very narrow. Anything less than 10 mm is usually considered to be cervical spinal stenosis ( Source). That alone should warrant surgical decompression of your spinal cord. You need to go to a neurosurgeon for this.
The fact that you have cervical dystonia makes it very likely that the cervical stenosis will get worse and is very unlikely to go away with time. I suspect that the doctors are unwilling to operate on you because of the dystonia. How severe is your dystonia and what has been done to correct it?
For example, there are procedures to denervate the spinal accessory nerve ( Source) that are sometimes done to reduce the dystonia. The other possibility is to use botox to reduce the movements temporarily so that the head movements can be minimized postoperatively.
In my opinion, the term "chemical irritation" does not apply to you. Based on your description and your MRI findings, you have a strong case for repeated mechanical compression of your spinal cord that is likely to be contributing to your pain. More important, it is likely to cause spinal cord injury damage. Both are more than sufficient reason for surgical decompression.