Unfortunately, as you already know, you have a very rare form of morphea and -- on top of that -- a rare secondary complication and set of symptoms from this already rare disease.
There is, other than the things you have already tried. Oral calcitol or Mycophenolate mofetil and in some cases the anticancer drug cyclosporin have helped a small number of patients who MTx didn't help.
In your case, you have already formed scar tissues and I very much doubt that these agents will be helpful to you.
As far as surgery? If it could have been done, your doctors would have already done it......
Cyberknife is just surgery with an expensive blade.....and you have already had radiation.
So. What is the take home message?
You could go to a large University hospital like the Mayo Clinic....but it seems you have already been under the care of some excellent Professors.....
At this point?
I feel you have reached the limit of what modern medicine has to offer you.
I wish that was not true, but from where I sit that seems to be the case given the information you have provided.
I realize that this was not the answer you were hoping to hear but it would be unfair to you and unprofessional of me were I provide you with anything less than truthful and honest information.
Surely, you prefer that I tell the truth rather than what you wish to hear. Because it reflects very poorly on me unless you press one of the top three feedback choices, keep this in mind when rating my answer and please do not punish me for being honest. I understand that this may not be easy to hear, and I empathize.
Even though my answer was not quite what you were hoping for, please understand that my priority was to provide you with the most honest information. With that in consideration, I hope that you found my answer useful. Please click the excellent feedback button so that I can receive credit for my efforts.
Dr. Rick MD FACS