Jimking

My second reply, lol.
Oh, and, by the way, I have contracted RSD twice from surgeries (and never from anything else), so I have a long history with these issues. Even 25 years into the disease it's hard to get any standard protocols or what is recommended for patients with existing RSD! And it is documented on my medical records that "patient contracted full blown RSD" immediately after surgery. Shaking my head.

thanks for letting me rant and vent...I need to turn it around...and smile and pray!!!

Do you have the option of telling them if they will not do the blocks and follow RSD protocol you will go to a different hospital, anesthesiologist, etc who will?

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.

The association may have a protocol, but won't matter when it comes to insurance and legal matters.
I have RSD too, and am looking at a neck surgery...
1 doc said fusion, but getting another opinion. Feels like a compression problem.. Trying to avoid any surgery, but my headaches are getting bad..

I keep hearing people get RSD from fusion surgery.. Not good!

Tashi

Yeah I tend to agree re: insurance/legal....and sorry you are in such pain. It is a hard road when we need to have surgery. Best we can do is try to advocate for what we need, and hope that doctors will help us get some treatments we need or that could benefit us...

Hang in there....

I had around 7-8 block and was always got first through pre op, wondering why they are changing their mind?
Confusing for sure, my first block was ok ,little pain after but I was working he next day and few days later I ended having muscle spams , after that my PCP order three days off to let my body rest and medication to work as it's supposed to but never lasted enough time ,the effect. At the end I got my scs, what I recently found out ,while I was getting my scs ,my left side leg was already rsd active and dr and even I missed ,I thought I was pushing my leg to much and protecting my right side been so affected that all my weight was on my left leg, but I have hell of a ride after the scs implant, until this past January it was repositioned to my abdomen , a month later got a second surgery ,gallbladder removal,due to stones and limb nodes, but I was very well care by my GI dr and the anesthetist who both new rsd,not crps, but rsd,mention both terms make a difference in my care, they where so careful before and after the surgery ,so my abdomen have quite few scars,I don't mind,but I'm ok,safe and sound, no extra trauma,neither pain at all from any of those procedures and why is that? Dr where educated about rsd/crps ,both teams where making the difference , if they are changing your treatment means either they don't know for sure or don't care enough, you don't need any of that bs, you need to be and feel safe,change dr if something don't feels quite right to you, your body know how much pain you already endure ,don't let them add more.
That's why I switched dr ,pm dr after few months, recalling conversations are not their specialty,really,they suddenly got memory loss,so why are the files for , the records they review in each appointment, just to get their offices full,of trash, really?
no, if you don't get what you need to avoid rsd spreading you are done there. I even heard an story about a lady getting rsd while a blood drawn and one more patient getting rsd after having a surgery and having taking her blood pressure, rsd can be trigger in many ways, why take the risk .
I had successful surgeries with not rsd spreading because the dr where prepare and educate enough, be mean than, print out rsd researches and give those to your dr and anesthetist ,maybe they need few lessons don't feel shy, teach them !!!!
Ignorance won't make us feel worse ,we don't deserve more pain, fight them with education and if they are still in denial changing the plans ,move and don't take chances, is something you can't take any risks ,you have enough , we can only manage so much,don't allow anyone to hurt you, leave and go a to a place where you can have real references from patients ,get the dr numbers ,stop by their offices and sit there ,ask patients how the dr are,is a way to make sure they are for real caring people.
I hope you find the best treatment you deserve and need and guess what, bs who thinks that is not right !!!!
So my advise, be more aggressive and demand if they don't listen,remember you can leave and complaint to medical board ,they are dr and anesthetist with public records and a complaint is something that hurts the credibility and also how professional they are , those complaints stays in their records.you can hurt them more when a board of medicine investigate them,each state records are public, go the dr board of medicine and complaint about the way they had treat you and leave,you don't need to get rsd everywhere for a negligent dr and anesthesiologist , you deserve right.
Good luck and hope everything get resolve in the best way for you ,no adding and getting afraid to get more harm,with love and blessings Jesika .