After 20 years, I think it's a label. The neck spasms pull the cervical spine into a reverse lordosis, or head is pulled to the side and down from cervical spine short bands to the collar bone.
I met a few people with dystonia, I don't know if it is degrees or misdiax, but they are severally twisted and spastic, not just what I have seen with traditional TOS lordosis.
I realize you can find a PT or a chiropractor hat ill say TOS....the doctors only familiar with the brachial entrapment, non vascular, don't want to give a TOS diagx. You will hear lots of labels.
A detailed pain diary, meds, pain levels/activity, body area affected kept is you're best friend. Keep copies of all test, MRI, ex rays, blood work etc.
especially the first symptoms, what happened, how treated.