I only know a little bit about the spine and its diseases/complications, but I do know you sound very depressed, and (I'm not saying you Aren't in severe pain or don't have a disorder), maybe you should seek help from a psychiatrist as well. For one, you are stressed, depressed, anxious and all that awful stuff. Two, the depression, etc. can cause pain to increase tremendously.
I don't know if that's helpful at all, but I know the desperation you feel, I'm going through the same problem, just different disease. I know it is beyond frustrating when doctors have become nearly useless, and you don't know where else to turn, that's why I suggested seeing a psychiatrist because you have a lot more stress on you now that seems like its causing some psychological effects. Maybe you can at least tackle those issues and get at least some relief in your life. There is no shame in seeing a psychiatrist. Please feel better and let me know what is going on

~ Amu