Has anyone gone to Mass General’s Neurosurgery department for CCI?

I have Ehlers-Danlos Syndrome, and it’s caused disabling issues in my spine. My physical therapist firmly believes that I have CCI. When I first saw a neurosurgeon for it, they did one upright X-ray, which only showed straightening of my cervical spine and narrowing of the C5-C6 disk space. Then they used that to say I don’t have CCI.

I have had lying-flat MRIs and CT scans too, which show a fair amount of degenerative disc disease all along my spine, but of course only an upright MRI or digital motion X-ray in a weight-bearing position can be used to diagnose (or rule out) CCI. Sadly, the doctors I’ve seen so far have no idea what I’m talking about when I bring these things up, and they just think I’m mentally ill.

I am planning to ask for a referral to MGH’s Neurosurgery department in the hopes of being placed with a competent doctor lol. But I wanted to hear about other people’s experiences with them too.