I just skimmed what you wrote, but I have Ehlers-Danlos Syndrome some skin involvement, but mainly lean toward ps the hypermobility type.

I was in a bad car accident in 2004, the whip lash was never treated and I ended up with adult onset Levoscoliosis and curves in two planes of my neck. The main front to back reversed the natural curve of my neck, stenosis at C-5/C6 and other areas with disc involvement. Laterally, my neck was curving with the opening at the left.

I've worked with carefully selected chiropractors and physical therapists. You have to be very careful in who you choose. You want someone who doesis great. You also need to ask lots of questions like what muscle is pulling this vertebrae a particular way.

It is essential that you do a lot of research yourself and understand anatomy. Using any tests images you've had done. It's very important to look at the images of my X-rays. The MRI reports where also helpful because I could learn a lot by researching the terminology. The X-rays do. It show the soft tissue which is causing the problem but by seeing the bone placement you can look and see what is abnormal.

My Levoscoliosis in September 2012 was a 15* curve. Working with a skilled physical therapist who did Pilates, active muscle release techniques, myofacial release techniques and dry needling with or without electronstim, in 9
Months my main scoliosis curve was down to 11* and I'd been able to get a good start on reversing the cervical curve as well. Parts of it are still problematic, but my nightly pain levels have gone from 9 daily to 6 or 7on bad days to 4 on decent days.

My shoulders were and are a big part of the problem with my neck. My right shoulder was what I called a functional subluxation. I've also worked with pt and on my own to unspasm muscles that aren't working right and pushing/winging my shoulder blade which caused tension in the muscles of my neck.

If you haven't heard of the Ehlers-Danlos National Foundation you should check it out. Their web site is a pain to navigate. Instead Google Ehlers-Danlos National Foundation and conference handouts. It should pull up a link that will take you to a page where they have about four or five years of handouts from experts in hylermobility, EDS and the type of problem you where discribing,'from the top experts in the field. I know there are several on the neck, shoulders and a lot of other areas you would finds useful.


Best of luck.
Hope this information is helpful