@csalter, I believe that you are referring to cervical instability related to Ehlers-Danlos syndrome (EDS), specifically hypermobile Ehlers-Danlos syndrome (hEDS). As you know, there is an Ehlers-Danlos Specialty Clinic exists at Mayo Clinic, Florida (https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/)

Spine care experts can be found at all Mayo Clinic locations.
- Spine Care at Mayo Clinic https://www.mayoclinic.org/departments-centers/spine-care/sections/overview/ovc-20426369

I hope you will find an expert who will help you find answers to your issues. Here are some patient stories and articles from Mayo Clinic
- EDS https://newsnetwork.mayoclinic.org/search/
- Spine surgery https://newsnetwork.mayoclinic.org/search/