I have Ehlers Danlos and since a very young age partially dislocate or completely dislocate several joints in my body. I have shifted my T4 enough times that my disc is herniated into the nerve space I was diagnosed with this 12 years ago and it's never going away (I also have a herniated disc in my neck that is not pushing into any nerves).
I had the decompression surgery March 15th, 2016 and had to have a second surgery April 9th because my incision opened to the dura (thanks to my EDS, weak skin). I am starting to have the shifting feeling in my neck which is the same sensation I get when I know if I don't quit what I am doing my back will go out. I have told all of my doctors about this and they don't seem to understand. I am terrified if I shift my neck out it will seriously damage something.
Long story long is there anyone else who has had this weakening of the neck after surgery with EDS? If so my daily strengthing is not helping how do I correctly explain this to doctors who don't fully understand my condition (neuro vs ortho)