Not sure where you live but my son bounced around from doctor to doctor eventually, we found Dr. Dennis Patin, MD University of Miami. He specializes in people who have nowhere else to go as no one wants to put the time in. He may not have all the solutions but he cares and working for Uni Miami they have more leeway than other specialists. Worth a try we had nowhere else to turn and we found ketamine treatment for the pain. Life changing for my son.