Connective tissue is part of the body’s support system. Ligaments help hold joints in place. When connective tissue is too lax or fragile to support the ligaments properly, joints may become less stable than they were built to be.

At the skull and upper spine, the craniocervical junction protects delicate neurological structures including the brainstem, spinal cord, and lower cranial nerves. In EDS-related CCI, the literature describes ligament laxity, hypermobility, cranial settling, and, in some cases, ventral brainstem compression. That is why the symptoms can feel so much bigger than just neck pain.

Headaches that do not respond to medication. Dizziness and visual disturbances. Swallowing difficulties. Autonomic symptoms. The body is telling you something is wrong, but this junction is still easy to miss within siloed care.

For over four years, I had been collecting diagnoses that did not speak to each other. Migraines. Anxiety. Reflux. TMJ. Myofascial Pain Syndrome. Each specialist looked at one diagnosis at a time. None of them saw the connective tissue connecting them together. The average diagnostic delay for EDS is more than ten years. By the time many patients are diagnosed, they have already cycled through more than a dozen specialists.

By the time the connective tissue diagnosis arrived, the years of separate problems had been one pattern all along.

The 2022 systematic review on craniocervical instability in Ehlers-Danlos syndrome (link) brings together the imaging parameters, surgical criteria, and connective tissue findings currently shaping how severe cases are evaluated.