Thank you for your quick reply! Just to clarify, a neurosurgeon is the one who would order the CT scan right, not my primary care doc?
Your primary care can order it. It's easier that way. But it has to be flexion-extension of the skull and cervical spine. Not all doctors are familiar with that test, so your primary care will have to listen to you.
Wow, I just looked up Tethered Spinal Cord and one of the symptoms is discoloration of the lower back. I have red striations on my lower back, right above my butt, and my dad has the same markings. His mother has the marks on the nape of her neck, I think. And Dad has always had back problems.
Yes. Everything you're saying fits the profile of EDS, tethered cord, CCI, Chiari.
Dr. David S Bell also thought I had symptoms of EDS, because my fingers and wrists were hyper mobile, though they've stiffened up over the years.
EDS hypermobility decreases over time.
All these pieces must fit together somehow, someday!
Hopefully soon. Good luck!