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Anyone with Cerviocranial Instability?

I finally recieved a Dx! Cerviocranial Instability!! I had a consult with TCI in NY yesterday.  Dr Rekate has ordered additional tests including a flexion/extension MRI, testing for EDS, and POTS. He beleives I have EDS type 3 with Disautonomia.

He said my clivio axial angle is 121, and should be above 140, closer to 150, and that was on the laying MRI, and that position he said makes the angle BETTER usually, so, it could be even worse than the 121...

Does anyone here have CCI? Does anyone have CCI WITHOUT chiari?  He said he doesnt beleive I have chiari. Im happy to leave it at that for now and focus on what we do know, and I do know the instability is the #1 problem right now.  I have to begin wearing a cervical collar as well.

For those of you with CCI, whats your treatment been, how was it/is it going?  Are there any other common issues or things I should be aware of or on the lookout for? I know the specialists even can get tunnel vision or miss something, though i have so much more faith in any of them versus my usual Drs who have repeatedly failed miserably to even catch something so major.  

Thanks for any and all responses!!
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620923 tn?1452915648
COMMUNITY LEADER

  As you know I do have both Chiari and CCI.....and I was told I would need a fusion sometime after I had decompression, but luckily I have been able to prolong facing it as it seems to be better if that is possible since my decompression....my neck itself seems stronger and I really feel the exercises I was given to do post op are part of why it feels stronger.....I could not ride in a car with out support....it was awful...especially riding up to NYC to visit my daughter....but it did get better with time.....

Sorry I can not offer much in the way of treatment or issues since I am not dealing with it at this point.....

Good luck and Congratulations !!
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