Diagnosis and treatment of CCI come from a small clinical community. A limited number of neurosurgeons specialize in craniocervical evaluation and surgical management. A small group of chiropractors trained in upper cervical techniques diagnose and manage instability without surgery. Some regenerative medicine physicians also diagnose and treat CCI patients using prolotherapy, PRP, ePICL, or MLS laser therapy. A handful of specialized imaging centers offer the dynamic and upright studies that often reveal the instability. The expertise exists, but the ecosystem is small.

Most patients reach these clinicians only after years of fragmented evaluations through other specialties. My diagnosis finally came after 111 appointments across 26 providers.

The 2022 systematic review on craniocervical instability in Ehlers-Danlos syndrome (link) notes that the diagnostic imaging and surgical expertise for CCI remain concentrated in very few centers.