Thank you for your reply, I appreciate it, truly.

I am working on talking to my PM doc, but I do fear and sense the more I advocate and try, the worse it gets for me. They back down and get nervous to do the things they clearly felt were important and standard treatment until I ask for it in writing or a plan of action. They only use broad terms with no set plan.

How they can keep on saying there are no protocols/standards is odd. I am not saying there in one set of agreed upon standards, but there are consistent things docs/anesthesiologists do to help reduce changes of spread or new RSD coming into site. I see it happen for others all the time. Each time I get a set back, it is like post traumatic memories. Being strong, an advocate, persistent, is exhausting really. But I forge on, and smile behind the tears.
Onward an upward as they say. I will survive!!