Questions:

How long have you had TOS?

Do you think it's gotten better or worse? In what ways?



I've had TOS five years.

In year 4 I had my right rib resection, and as a result, I didn't have headaches for over a year, (although they are now back about 30%.) Also, the vast color changes and swelling went away. The RSD calmed down. The "suicide pain" (the highest pain imagineable) has almost completely gone away - I still have occasional bouts, but most of the worst pain is about a 9, rather than the level where I just can't believe it could go...

Overall, in five years I've gotten generally worse since I am usually (90%) bedridden, and need an aide in order to survive. (As almost everyone knows, before TOS I was working more than full-time, worked out or ran almost every day, and I travelled a lot.)

P.S. You do not have to participate in this, if you prefer not to. I just wondered about other people's experience as far as "time."