Hello

I have had RSD for 20 plus years. Yes, owch. . I developed RSD originally from a MINOR surgery to L knee which left me permanently inflicted with RSD. Then in 2005 I had surgery on L arm/wrist which left me with full blown RSD in left arm despite a block pre op. Surgery is the direct cause, and so far, sole cause of my intense RSD. I now need a hip replacement on the R side, and am really really uncomfy having this done due to RSD. My previous surgeons, docs did not do what was medically necessary or prescribed or follow a decent protocol to help me avoid spread or as I call it NEW RSD since I feel the RSD in my arm was a new injury, not a spread. RSD is lurking all over my body just waiting to jump out at first cut, lol.

I also have other medical issues which made surgery very difficult. I have to have the surgery. I am at the point of needing to schedule it but NEED a reputable surgical protocol I can give to anesthesiologist, surgeon, pain management team about pre, during and post op treatment to help prevent and God forbid, treat any new spread. I know many people have had surgery without spread or getting new RSD.

Please, please share with me what you and your docs, surgeons, pain management, anesth dept has done to help you for a major surgery. I live in an area with the best of hospitals and surgeons, very well known, yet I cant seem to get the care and help I need when it comes to RSD and surgery. I will not be able to physically handle another limb being taken over to this horrible beast. WHAT did you have done to help prevent RSD?

Epidural catheter?
IV?
Pre-emptive meds weeks before surgery?
Additional hospital stay for a day or so before surgery to get meds in you early and calm system?
IV lidocaine, Ketamine, etc?
Do you have something written down? How did you get insurance to approve it?

Thank you all so much. I never ever wanted to have surgery again, and I am facing this again with a lot of fear, trepidation and so far, lack of support from the medical world to help me stop the beast from being a bigger beast.
Soft hugs for all!!!!

Hello,

I am so sorry for your long battle with RSD!!

Have you discussed this pending surgery with your PM doctor? He/She should be willing to work with your ortho doctor to ensure you are treated with the very best care all the way around. One thought comes to mind is your PM admitting you for pain management prior to your hip replacement, where by they could administer an epidural anesthesia at least 24 hours before your hip replacement. Then your PM doctor could explain to your care team (especially nurse manager & physical therapy team) the complexities related to overall care for those afflicted with RSD/CRPS. When you have your pre-op appointment with the anesthesiologist I would ask for them to consult directly with your PM doctor to ensure the utmost care is given to you. One thing I've learned is that many doctors/nurses do not respond to acronyms but, often if you say 'complex regional pain syndrome' rather than CRPS/RSD they will more likely recall previous experience or at the very least look it up on 'UpToDate' for medical professionals.

Being that my CRPS II originated during a complex hip procedure (Peracitabular Osteotomy for hip dysplasia & labral tear), I sympathize with your situation completely!! On a personal note - I would discuss in great detail the pre-cautions your ortho will take to protect your nerves during this operation. You mentioned the surgery is even more complicated for one reason or another.. this would in my opinion make it even more critical that you and your surgeon feel confident in the approach, implants etc., to reduce all risk for CRPS and just as important need for re-operation due to unrelated complications or early revision. Have you discussed prophylactic meds to prevent Heterotopic Ossification? This I would strongly suggest as it is a relatively high complication and could occur in the area of nerve bundles (as it did following my hip operation). Vitamin C, Vitamin D3, B6 & B12 daily prior to and following your operation would be one of my recommendations. Do you know which approach they are planning with your replacement?

Sorry for all the questions.. having already had 6 major hip operations with still bilateral hip replacements in my not so distant future - this really hits home!

Wishing you the very best!
Tessa

Thank you so much for the reply!! You are so sweet to help me.

1. I will speak in more detail to my PM once I schedule the surgery but he knows my history and hopefully he will work with me as best as he can. They all seem to shy away and coil up when it comes down to actual agreed upon protocols that are used and are very non committal which often makes me crazy, lol. This time I will make sure I have better care, and I like my PM doc, he is here to help. It still seems so hard to actually make anything happen. Talking about it is one thing.

2. I would love to be admitted a day early and have epidural, that is my small dream in life, lol. I will fight hard for that, PRAY!

3. yes good idea, re having anesthesiology consult with PM doc ahead, that is another dream! He is LUCKILY affiliated with the same hospital for once. :-)


4. I am deeply sorry and empathetic about your surgery and RSD, wow. I feel for you.

5. I planned to talk abt prophylactic meds w/surgeon and PM doc but I cant take the ones they use the most like Neurontin. have not heard the medical term you used before, have to look it up. YAY google. lol

6. I started Vit C but need to be better about it, and will start the others. I am bad about that but this is a GREAT reminder. You are so helpful and this is right in line with my plans so it is good to be reassured in all this. Great minds think alike I guess. :-)

7. Doc mentioned the anterior approach thank God, but I will learn more about that at next appt.

8. ARE u serious? 6 hip surgeries, that is really really serious. I am so hurting for yyou. How the heck have you survived RSD and that many surgeries? You are my hero. Gosh I feel like a total complainer now.

Hope I answered all the questions. I really can't thank you enough. Though I have lived with this for so long, and had other surgeries, I still feel like I am starting over every time, from scratch with getting help from docs. It has been traumatic to walk into surgery without protocols and come out totally messed up with crazy RSD knowing there were precuations they could have taken. Breaks my heart...makes me so....GRRRRRRRRRRRRRRRRRRR

:-)

From recollection there is some limited information about pre-surgery analgesia and anaesthesia to be found on the RSDSA website. You would need to do a bit of searching but it will either be under their publications or listed in the comprehensive index of selected research articles.

The reality is that there has been virtually no research or work done on protocols to prevent either new CRPS symptoms or a spread or worsening of CRPS symptoms in patients who already have the condition but who subsequently require surgery. This is why it is virtually impossible to find any information let alone protocols or reliable advice that you can take to a surgeon. Such protocols don't exist. The general advice that in CRPS patients, invasive procedures should only be done when required as an emergency isn't entirely useful and ignores the realities of life.

You are very welcome!

Re; the prophylactic meds to prevent HO from occurring after hip replacements. These meds are not for nerve issues (ie., neurontin, gabapentin etc.,) this would be prophylactic meds specifically aimed at preventing 'heterotopic ossification'. Most commonly higher doses of NSAIDS like Celebrex or even Ibuprofen taken for several weeks before and after surgery. Sorry for the confusion.

Heterotopic Ossification: The heterotopic ossification of muscles, ligaments and tendons is a potential complication following trauma, elective surgery, neurological injury and severe burns[2]. The most common site for the formation of HO is following open-reduction internal-fixation (ORIF) for acetabular fracture, followed by the hip after total hip arthroplasty (THA)[3,4]. Following THA, the incidence of HO has been reported as being between 5 and 90%, though only 3 to 7% of patients experience clinically significant HO; that is, to an extent that the outcome of the surgery is affected and as designated a grade of III or IV as originally described by Brooker in reference to the hip joint (Table 1)[5,6]. Reported incidence is lower following primary total knee arthroplasty (TKA), and has been reported as between 3.8 and 39% for all Brooker classification grades, but as one study reported only 1% of patients were symptomatic[5]. LinkOut: http://www.josr-online.com/content/4/1/12

If you have an appointment with your PM prior to scheduling surgery then this might be a good time to discuss what protocols he/she would recommend. It may also be a great opportunity to discuss admittance prior to the operation which will likely be difficult to get approved for the hip replacement unless your ortho is completely on board with admitting you early strictly for pain management and authorizing the THA as a separate procedure. There are ways of doing this outside the insurance restrictions but some doctors don't like to do it. I would work with both your ortho and your PM doctor way before committing to surgery if possible. If your doctor understand anything about CRPS.. knowing full well that he/she will be in an area where there is a decent amount of risk to the nerves (especially the sciatic and LFCN) then he/she should listen carefully to your concerns. If they don't then no matter how reputable the institution or doctor seems I would seek another opinion with someone who will listen and act accordingly. The least they could do is ease your concerns considering your past response to surgical intervention and spread.

On a positive note - if you aren't admitted early there is a chance that you won't experience spread. I know that is hard to believe but, as you know all to well there isn't a rhyme or reason to how CRPS progresses. I do hope your surgery is a huge success and this time you have no issues with CRPS!

I feel for you also!! Thanks for your kind words. I was actually in a head on collision that precipitated the need for surgical repair to many body parts including both my hips. Then when complications occurred I had to have more repair done and then.. CRPS II I actually just had my 14th operation (10 prior to CRPS and 4 after).. and surviving CRPS/RSD.. I'm only surviving now because of my amazing PM doctors who recently implanted an Epidural Cath-a-Port (tunneled epidural with internal port) so that I can receive continuous epidural infusion to control the pain. So I am getting similar meds as you will receive with your epidural during your THA - Fentanyl & Ropivicaine which relieves my legs from the pain. It is wonderful! How have you managed over the last 20 years? Any advice on what has worked the best for you? Did I understand you correctly in that you don't have severe symptoms on your right side?

Do you mind sharing what state you are in? Just curious if you are anywhere near me

Thanks much!

This seems to be the really unfortunate truth!! It really really bothers me, the general info is so basic it has nothing to do with actual anesthesia and surgery, just things to help your hospital stay, etc. It is baffling that we have to suffer this horrendous disease and the typical response is DON'T HAVE SURGERY....lol. That is not quite that easy ... Or...make sure you tell your doctors/anesth. you have RSD/CRPS. That has never helped get me what I need. I wish it did!! This time will be different, I have faith!!!!!!!!!!!!!!!!!!!!!

ARGHHHH :-)

Thanks

ZOOKESTER

THANK YOU!!

Would love to chat more about this, you are so helpful, and if I can be of any support to you, wonderful!!! I will reply later. You have no idea how helpful this is. I left the boards (Brain Talk, Neuro/RSD) etc a long time ago as I needed to move forward and not focus so much on this, but it is good to be back and among fellow WARRIORS! YOU are for sure a warrior.

I will reply more later. I live East Coast, am glad to privately tell you which state. I am being careful about what I say online :-) I can't believe all that you have been through...... soft hugs

Zookester

I have written three really long posts back to you and since I am a new poster, though I was here years ago, the system won't let me post anything with links or images until I have more time here. I am not sending anything with links or images so I am not sure what is wrong. Anyway, I was trying to reply and wanted to say thanks and answer your questions.

Newbie problems ha ha

Thanks again so much for your time and support, hope I can repay it for sure.

I am trying to post without replying with your copy in it, hoping this will work. Maybe because I am replying with your text in it, it is considering me as posting links. Head scratcher.

Let's see if this works!!

lol... you are so welcome!! I haven't actually been on the site much in the past week as life just got a little busy with family over the holiday weekend. You can always PM me anytime sometimes that is easier and a bit more personal. I will send you my email address as well

Hugs and good vibes coming your way,
Tessa

Burnbabyburn,welcome and I'm deeply sorry that we have to share this horrific condition,you 're truly a warrior,so many years,everything that I might think our good friend Tessa already gave you the best advise ever!she is so great,I'm sure you will be fine,always remember ,avoid any kind of pain during and after surgery.
I had almost two moths after gallbladder removal,I was treated so well and both GI dr and anesthesiologist was so involve with my condition ,that made a difference from my previous surgeries,communicate with the dr ,that's the key,wish you well and hope soon you will be talking about how well you are recovering,blessing and gentle hugs,from Jesika .