Surgery: no block pre-op? WHAT??
 

Hi
I appreciate any advice or soothing words anyone has. I have RSD left leg and left arm and am having hip replacement surgery on RIGHT leg. My RSD has been contracted both times from surgery, directly.

I met w/the anesthesiology dept. last month to talk about RSD, pre-during, post op etc, other things I have going on, and they seemed very willing and on board to do a lot to help me. Now the closer it gets, they are backing off and saying what they are NOT going to do. Each step they take back, really makes me uneasy and lose a little faith in their word. As I pushed to get some things in writing, they are pulling back. While they will be doing spinal epidural and regional anesthesia, they said they will not block any sites/body parts/area to reduce risk of spread. So they won't block my arm, at all.

When I was in the consult, they were very tuned into the blocks. We talked about it in depth, now, they won't be doing ANY! I'm exhausted going through this every time, and being an advocate for yourself seems to really upset them. What seems possible and helpful then turns into NO we are not doing that. Am I alone here, been fighting this for every surgery, and just don't get it. The hospital/anesthesiologist said they are not familiar with those blocks? Really? What if I was having upper limb surgery again? Sigh. I don't want to be a pain, nor dramatic, just want to protect myself, as not protecting myself has only led to RSD.....you know? I do feel alone in this battle when it comes to doctors and surgery, they want to help but are limited it seems. Or am I asking too much? Is it me?

Thanks

I know that I am not of much help. I have no suggestions for you. I do understand how you feel about having to be your own advocate. Are there other doctors that can do the surgery? Do they give you a reason why? I would be searching and asking why they are backing out on there own word. I do hope that you can get the help and care that you need and find someone that will do it your way. Surely there has to be someone that will.

Phaedra

Thank you much, sweet of you to reply. I seem to have this issue wherever I go, every time, in some form or another. I have seen 3 other surgeons and this team of people were the most in tune with RSD and protocols but not it seems once I wanted things in writing and a real plan, they are getting cold feet. It has been many ups and down getting to this point and I finally felt I made progress on this 20 plus yr journey with RSD and surgery. To my face and in person, people talk as if I will get the care I need/hope for or at least some of it, certainly not all by any means. But once it comes to the real deal, no one wants to really have a plan of attack but me. LOL. GRRRRROWWWL.

Even the top hospitals don't do much for RSD patients around here and I am in a very hospital heavy area with great care a stones throw away, just not if you have RSD. For real. :-) It is the devil and doctors see it as so too unfortunately.

thanks much

Our health care system is driven by lawsuits, doctors are always in "cover my own butt" mode, no matter what. For the anesthesiologist to give you a block in the arm is too much risk for him. If something goes wrong in that arm it will be difficult for him to defend doing that block for a "hip" surgery. VS if you get spread post-op it cannot be proven it is due to him NOT giving the block. SO he's going with the " cover my butt" option. I'm not saying this is good medicine, I'm saying this is the reality of how treatment decisions are made. Add to that - the other major driver in our broken health care system , insurance reimbursement. He isn't going to give the block if the medical insurance won't pay for it. Sorry to be a debbie-downer.

Can't the surgeon , or your pain management or primary care dr override the anesthesiology dept decision?

Lottie

Thanks and I needed to hear that. I completely agree with you. Was just saying same things. I was talking to my friends (complaining, lol) and this is what I said. It is all "cover your *****" mentality. I realize some procedures are dangerous or considered risky or non necessary when it comes to patient care. BUT it is infuriating witnessing the mentality & care is basically driven by lawsuits and insurance, rather than patient care & addressing the issues once the damage is done, or running from them as many docs do!

They would rather deal with the aftermath of things..."if you get RSD then, blah blah..." That is just backwards. RSD is not a cold or a sprained toe, it is RSD, it almost never goes away and treatment is terribly ineffective or at least it has been for me for 25 years. That is not being negative, it is being truthful. The "if you catch it right away" it is really treatable/good response is a joke to me, personally. I only speak for me. I watched myself not get protocols and not get xyz and 24 hrs after surgery came out with full blown RSD. No immediate treatment helped me, it made me worse. Had they tried to help me pre op, or during, this MAY not have occurred. Why don't they do the basics to help reduce the chances rather than put us in more danger for way longer periods of time. I have RSD for life so far. That does not mean it won't change, but I would rather they spend x amount of dollars on one day of treatment pre-op than millions on fighting the demon RSD after it sets in your body. Just plain DUMB medicine. Did I say DUMBBBBBBBBBBBBBB lol
Rant over, lol.

Thank you

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!!

Burnbabyburn, I've heard of other doctors performing surgery on those with RSD and using blocks etc. Is there anyway to track down those doctors, not so much to perform the surgery but to gather all their info for your doctors to read? I do believe there is a protocol, perhaps you are aware of, for those going under the knife who have RSD.

Hey Lottie

I posted a reply earlier but it didn't go through. Thanks for your thoughts and I totally agree with you. 100%

You are not Debbie Downer you are realistic and I appreciate it! I know this, but wish it were different. It is backwards thinking and the docs, insurance and myself (all of us w/issues) spend way more time and money by not being given these measures and potentially developing RSD! They should do the things they CAN do to help reduce the chance of.......xyz. That is all I ask. It is too much to receive it seems. They would rather approach it after the fact when it is too late, and deal with your RSD or not deal with it, then spend an hour or a day helping to prevent it BEFORE it happens. It's like we have the plague, lol. If they only knew what it felt like to have this disease, and many others many of us face, maybe they would see it, treat it differently.

thanks much
have a great day

JimKing

Thanks for your post. Yes many hospitals/doctors use blocks on patients with RSD pre op. It's pretty standard. It's odd I am getting push back after we talked about it in person and agreed on what was the best course of action for me. But when push comes to shove, I have had push back with other doctors/surgeons or anesthesiologist before. The real issue is, they can tell you to your face they will do x,y,z but it rarely gets puts in writing, and if it does, once you hit that hospital and operating room, they have all the power and don't necessarily follow what was prescribed, suggested or recommended. I am not trying to scare anyone or be dramatic, it is merely my experience. There is no guarantee they will do anything but standard protocol for that surgery regardless of RSD and many other conditions. I was very prepared and met with anesthesiology already to work this out even though my surgery is many many weeks away. But what was said behind closed curtains is now not what seems to be happening. It makes me uncomfortable. Changing hospitals and surgeons does not help the matter unless you can get said protocols in writing, blood, skywriting lol...etc and then still, it seems they do whatever they want once you go in, regardless. I try hard to advocate, calmly, respectfully and non aggressively, but with conviction, but I guess I am just not that good at it.

I am hopeful it will turn around, soon and things will get back on track, but I am nervous.....I keep the faith and keep pushing forward!!!!!!!

thanks

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. :cool:

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. :eek:

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

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! :-):cool:

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.

RSDSA may have a protocol
 

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 .:grouphug:

Thanks so much Jessika

I am at work so I can't respond more than THANK YOU right now. You are so sweet to offer support and advice. :o