Shelly

Thanks for your reply, i appreciate all the support here.

Yes, I have that option, but my issue is, and has been, that it is equally as difficult to get the care I hope for no matter where I go.

The reason I chose this team of people is because my PM is either on hospital staff or affiliated with it, knows and works with my surgeon and they were the ones (along the anesthesia dept) who seems to actually get this better than the other doctors/surgeons and be in my corner to help me.

I am stuck between a rock and a hard place because my PM doc is not affiliated with other hospitals, and at least he has some input here, knows my case, knows me, although it seems I still fighting hard to get what I think is reasonable.

If I chose another hospital, I am on my own. Already have seen 4 surgeons to get me to this point, hard to diagnose and decide what THEY thought was best. This collection of people now were and have been my best bet and a good choice so far (BUT...) it feels like now that it is getting closer, they are backing down. This happens a lot in my case or from where I stand/sit/limp lol. I guess standard protocols for "regular" patients is all they do or plan to do (unless I make more headway) even after lengthy conversatations, complex history and over a year of planning and discussing what would need to be done if I were to have this surgery given all my other issues and RSD in half of body! They do agree "aggressive pain management techniques" are part of this, but that is post op. I am equally interested in pre-op handling of my system and body, pre-emptive modalities.

Just last night I was reading threads here and came across so many where people's experiences were so different than mine. I am tickled pink that others are able to get IV, injections, epidurals etc, ketamine, in hospital stays with blocks, etc. I seem not be able to get the same things and I live in a an area with top doctors and hospitals, many of them. I have changed docs many times to find the help I hope for. I love my PM doc (basically I am only on some meds) but I like him, trust him, but I need him to help me push through and get the treatment that is recommended for RSD/surgery etc. It should not be this hard.

Heck I am ready to go see a VETERINARIAN and let them do it, HA HA HA HA HA HA!

Thank you!!!

My wife and I are in the DC area and lousy care and indifference is abundant here. Has your PM talked to anyone at this hospital on your behalf? Just the fact that you acquired RSD from surgeries would justify extra care. What strong arguments are they making against these protocols? Have you printed out those protocols for them to read. I believe they exist on this site---http://www.rsds.org/index2.html

Is your health insurance in any way shape or form jumping into this, between you and your doctors?

Jim King

I don't like to reveal too much about where I am from online but we are not too far apart in area. And yes, my PM set up the discussion and call with the anesthesiologist, lol. And then I went and had a meeting for 40 mins. It is baffling to now have the same scenario seem to play out in back tracking and people not willing or wanting I should say, to do as much as possible to help a RSD patient. Perhaps I am not in the know or over generalizing what they do plan on doing, because I heard what they would not. I need to refocus and hear back from the pm doc and hope for the best. Written instructions and protocols don't seem to matter - I have that and it won't even hold up.

If you use the word "protocols or standards" every single one of them will coil back in a ball and tell me, repeatedly "there are no standard protocols for this, for you, for RSD" which I know is untrue. I have studied this for 20 plus years. The protocols are similar in every case. So I don't know what the argument or hold up would be. I need to keep trying to get those answers while staying positive. They hate when you call and ask questions. Let alone show them papers, procedures, because it is like you are telling them how to do their job. It is baffling, but thank you for your kind replies and hashing this out online with me. I do feel like a lone wolf howling into the night-and find it mind-boggling how hard it is to get these measures along the way.

I have a letter FROM a pain management/anesthesiologists tied into the very same hospital I am going... with recommendations on what to do if "patient need surgery" and still many places have ignored and discounted any of that going back to "there are no set this and that...". And when you say, ok...well, typically RSD patients who undergo surgery have x,y,z they don't care. Or they don't have the ability or go ahead from other people to do those things. Did I say MIND BOGGLING. LOL

Thank you so much, you are really thoughtful for advice and help, i take it all in and see what I can do! I have tried so many methods over the years...it is like hitting a brick wall.

And, no, health insurance is not in middle of this, I just got surgery date and insurance company is not going to be called until 3 weeks before surgery. (said surgical coordinator) So they are not the holdup...believe it or not. Good questions though, smart man! :-)

I wonder if you approach the subject with your ins carrier, perhaps they can persuade the drs to adjust their protocol for a RSD patient..and/or verify it would be covered just to be sure of that issue?

For the Ins co it certainly would be less costly for them if you don't have another spread after surgery...
* surely it can't cost that much more to do the blocks etc??*

Jo*mar
Thanks. I think it is a good recommendation and I have considered it, yet been a little skeptical as to raise a red flag around this surgery.

But I think it is time I try exactly what you said! I did get a case manager on board when I knew I was running into trouble or complex issues. She has been helpful. I always felt (perhaps incorrectly) that insurance co's were the exact people not to bring these things up to for fear they would deny them ahead of time, rather than me just hoping I get them when I land in hospital-ville USA, lol. I had wished it would be MY docs calling the insurance companies to say why this was "medically necessary" or something. The whole time this has been going on, I actually believed my docs would support this 100% and be my advocates for the first time, going to insurance co for me, on my behalf. I can't even get them to agree on things to do...:-) Still trying. I am making a call today, nervous to even ask/talk/discuss because every step I take to help myself or ask a question, they want to run away....lol. RUN FORREST RUN!

Thanks, I think I have a plan for today. We will see how it goes.

Have a great day and I do really appreciate your and other peoples comments and suggestions.