I had my surgery 5 months ago, and my neurosurgeon said the only thing an EDS diagnosis would mean for him is regarding his method for surgery, but he is already cautious with Chiari patients due to possible EDS comorbidity.
He told me that I would need to see a rheumatologist for EDS diagnosis, since they specialize in connective tissue disorders. I’m in Sacramento and it’s been quite the road to find a rheumatologist who will diagnose and treat EDS. My pain mgmt Dr said he believes there is an EDS specialist at UCSF, so I’ll be looking into it. This might be an option for you if you’re willing/able to travel.
Have you tried any teaching hospitals? I was diagnosed with occipital neuralgia and it’s a direct result of the Chiari surgery, and it’s a bad case of it (been outit of work Side surgery 5 months ago). The teaching hospitals have been the best so far, especially Stanford. Stanford is an amazing hospital. Nothing better on the west…It would be worth looking into, IMO.