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?

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!!

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

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