@adalwolfa Welcome, Ute. Was there any surgery offered that could help you with the displaced clavicle? I know someone who had a congenital problem with the clavicle where the ligaments were small and weak and lost their connection to the sternum. She had surgery to reattach them, but it isn't a great solution because they will move more than they should even though they are attached. She can use her arm, but can't lift or raise it much. I got the impression from what she said that there are very few surgeons for that kind of problem. Do you still have compression of the brachial plexus from the clavicle? Since you have been seen at Mayo, you might want to connect with the department with Regenerative Medicine studies and see if there is anything you could participate in. I don't have any experience with that, but the are having some good results with stem cells with regeneration of the spinal cord in a patient. That was just in the news feed.
I have not had an intensive MFR treatment, but my therapist does MFR with me every week and told me about it. The cost might be a couple thousand dollars from what she said, but only the provider can answer that. They have 2 locations, one in Sedona, and another. There is a provider finder on the myofascialrelease.com website. Here is our myofascial release discussion where there is a lot of information and links. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I have done MFR since about 2012 and my PT is an expert level in the John Barnes methods. I do a lot on my own at home which helps my progress with thoracic outlet syndrome. In the middle of this, I had cervical spine surgery, and I am back working on the TOS again and making progress. I have lived with this for years, and it takes a lot of work and patience to work through the layers of tight tissue. There are also workshops around the country from John Barnes and some are geared for patients. He could be there, but not always as he is older now, and has a lot of his PTs teaching his methods. It would also be a place to connect with MFR therapists. From my personal experience, MFR helps me a lot, and I keep it going by adding my efforts at home, so I have self treatments most days with only one session with my PT. If I was to stop stretching on my own, I wouldn't progress anymore. Once you get the body moving properly again, you have to keep moving to avoid developing more problems.
I have been at the Mayo Clinic and the Washington University. No viable pain solution has been offered. Regenerative medicine was not discussed. Surgery is no longer an option since the injury occurred in 2009. I, too do a lot in helping myself with a lot of exercise and fifteen miles of hill walking every week. The John Barnes method is certainly something that I am interested in, and I shall contact them shortly. I believe that would help me also. Thanks for your input.