Cervical Mri For Autonomic Issues

[Nymph]

Hi everyone,

My cardiologist is sending me to get an MRI of my neck to see if that's the cause of POTS. My dad (neurologist) advised me to get an upright MRI so as to better judge instability issues.

Has anyone else had this done? Was it helpful?

If this shows that the problem comes from my neck, then I won't worry about it being small fiber neuropathy from my Sjogren's as the cause, which may demand more expensive and potentially dangerous drugs.

This was an interesting video we saw about the connection between POTS, CFS, EDS, and Chiari. My dad and I both thought it was very helpful. I don't know that I have EDS but I do have some hyper-flexibility.

http://vimeo.com/71903707

[Katybug]

I am a patient of the group that organizes the meeting that you posted the video of. I have cervical spine instability resulting in what they refer to as cervico-medullary syndrome. The neurosurgeon who diagnosed and operated on me considers an upright mri of the brain and neck (neck in neutral, flexion, and extension) the gold standard for accurately diagnosing c-spine instability and Chiara Malformation.

I should also add, to be fair, that it was reinforced to me by my neurosurgeon, the neurosurgeon I got a second opinion from, and my POTS neurologist, that there is no guarantee (or even solid research findings) that stabilizing the c-spine will reduce or fix dysautonomia symptoms. My c-spine was screwed up enough that it needed to be stabilized for safety regardless of whether it made my symptoms better or not. The first 2 weeks after my surgery I was great with basically no symptoms, after that it was a slow progression back to my normal symptoms. The doctors and I have conjectured that either the anesthesia or the fluid loading from the IVS for 2 days may actually be what made me symptom free for those 2 weeks. I'm still glad I had the surgery as I don't feel like my spinal cord is in a vulnerable state from even a small trauma but it didn't fix my other problems.

[Nymph]

Thank you so much, Katybug. That is interesting and useful information. I would not consider surgery unless my symptoms got much worse and were uncontrolled by other means. I mostly want to know whether we should investigate and/or treat this as autoimmune neuropathy. This seems like a good thing to rule out first.

I am glad that it helped your spine stability, at least.

[Nymph]

Now I am trying to get insurance approval of the cervical MRI. My insurance approved the brain but not the neck. I am really hoping that this works out! I have had neck pain since my early teens and think that this is a likely culprit. Any tips on getting this approved? I have never not had something approved before.

[Katybug]

None of my mri's (regular or upright) were questioned by insurance. I think the doctor will have to write a letter stating/justifying why the mri of the neck is needed. Your I surname company should tell you what the doctor needs to provide to them to appeal the denial.

[badhbt]

I too was in Katybug's situation. I did the surgery knowing that it would probably not fix my dysautonomia,... which it didn't. I am not unstable anymore, and I don't regret doing the surgery.