Lindsay, you are still having issues I am so sorry. It’s a very hard thing to go through surgery and still not be ahead of the symptoms. I know you did not mention a syrinx, and that’s ok, but I’m going to paste a response from another post that I think is fitting…EDS and CCI.
Ehlers Danlos Syndrome is a hypermobility disorder. A collagen elastin problem causes soft tissues to stretchy and lax. Lax ligaments allow CRANIO cervical joint and lower cervical joints to become unstable. This instability will Streatch, and deform spinal cord and or brain stem. Symptoms mimic Chiari, most NSs are not aware of Cranio cervical instability in Chiari patients, so don’t screen for it. CCI is present with about 20% of chiarians. There several kinds of CCI: vertebrael instability (translational movement), basilar invagination, retroflexed odontoid, sharp clivo-axial angle.
The NSs who diagnose and treat CCI in chiari patients are:
I’m sure there others who I have not heard about.
These are some great videos about EDS and CCI
Greater metro area
All videos about Chiari/CCI/EDS
Google the Beighton Criteria and the Beighton Criteria to get an idea of how EDS is diagnosed.
Keep at it you will find the help you need…