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!!