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RSD Problems

tcr1130ttcr1130 Posts: 122
edited 06/11/2012 - 8:46 AM in Chronic Pain
i need advice from my fellow spine health friends...

i got RSD after my 2 level xlif surgery last year, finally after a change of doctors and finally being told what was going on, it appears neither of my levels fused and they want me to have a 2 level Plif ASAP.

my question is, what percentage of people have had their RSD spread after a second surgery ( of any kind) right now i have 3 doctors telling me it can spread and there are no guarantees, and the doctor that is doing or would be doing the surgery said he will be no where near the sympathetic nerve and feels that the RSD will not be an issue....

am scared because i have been told that any type of surgery could cause the RSD to spread, but it is hard to get information on this since i am not in the medical field....
my surgeon has not even done an XLIF procedure and he would be removing everything from the XLIF and doing the PLIF., i know this doctor i have now is top of his field when it comes to the PLIF, but i went thru a lot of things after the xlif, including the RSD, and I was paralyzed on the left side (arm/shoulder) for over 8 weeks ...

i need to be so much more informed than i am right now., i saw my primary this week, and all he could offer was that there are no guarantees with RSD , that i risk it getting worse., but the only way to be rid / or have a better quality of life was to get the PLIF done....

need advice, anyone who can offer it, i would so appreciate any info!!!!

thank you



  • Hi Tammy,

    They are absolutely correct about the issue of the spreading RSD or CRPS. But here is my take from someone whom has it. I have had multiple surgeries sense getting it and have not had a issue yet with it. What does your latest bone scan show in regards to the RSD? What part of your body is the RSD in? It is also correct the surgery itself won't go near the sympathetic nervous system. I can tell you after each surgery I am compulsive about moving the effected limb. I know it can't do anything that the joint has to move.

    Also did they ever say why you came out paralysed in the arms from a lumbar surgery? Lumbar would effect the legs not the arms. Just curious how they did that in surgery?

    Have you had successful treatments with your RSD? What type of treatments are you currently in for the RSD or is it in remission.
  • Here's one of the best articles I've read on RSD/CRPS and surgery. http://anesthesia.stanford.edu/pain/CRPS/Preventing the Development of Complex Regional Pain Syndrome after Surgery.pdf

    Below is the final conclusion of the article.

    The development of CRPS after orthopedic surgery is
    not uncommon. The paucity of randomized controlled
    clinical trials for the prevention of postoperative CRPS
    underlies the difficulty encountered by clinicians in
    choosing an optimal perioperative treatment strategy.
    Most clinicians emphasize that surgery on the extremity
    affected with CRPS is to be avoided because of concern
    that the symptoms will recur or worsen. The consensus
    in the existing literature is to wait until the signs and
    symptoms of CRPS have resolved before performing any
    surgical procedures, although there is currently no evidence-
    based data to support this belief. The use of re-gional nerve blocks that provide for a perioperative
    sympathectomy may be advantageous with or without
    general anesthesia for CRPS patients who requiring surgery.
    Upper extremity surgical procedures may benefit
    from a perioperative stellate ganglion block or intravenous
    regional anesthesia with clonidine rather than
    guanethidine. Although a wide variety of pharmacologic
    agents have been advocated for the prophylactic treatment
    of CRPS, only vitamin C has been shown to be
    beneficial in prospective, placebo-controlled studies.
    Larger randomized, controlled investigations are necessary
    before any definitive conclusion can be made regarding
    the efficacy of calcitonin, mannitol, corticosteroids,
    carnitine, and ketanserin. The role of preemptive
    multimodal analgesic techniques in conjunction with
    physical therapy and rehabilitation after surgery seems
    promising, but further research is needed before any
    definitive conclusion can be made. Finally, the optimal
    timing and duration of treatment for using perioperative
    regional nerve blocks or pharmacotherapy in patients
    with CRPS has yet to be established.
  • TamTam, I didn't know you had this. My heart goes out to you and to every single person who is fighting this.

    My daughter just turned 16 today and she is having one of the worst flare-ups ever. RSD has spread throughout her entire body over the past four years, but she is still a pillar of strength and her will to beat this dreaded disease humbles me and my relatively petty back issues.

    So, the purpose of my email is to mention an organization who is committed to research and support of people with RSD. Am I allowed to do so? I would hate to get edited for sharing a resource and I don't mean to violate any rules. This is simply a non-profit organization run by a wonderfully compassionate and professional person. The organization is called RSDSA and they are headquartered in Milford, CT.
    Their website is http://www.RSDSA.org. I hope you will check it out and speak with their leader.

    I'm not sure if they can offer specific help, but we have found some very important insight for our daughter through their newsletter.

    As my daughter cries all day, yet again, I pray with all of my heart for an end to this terrible disease.

  • my rsd affected my right foot., and sometimes into my right calf... but always my right foot... i had an 2 level xlif done a year and a half ago., i just found out two weeks ago from another neurosurgeon (actually the one i trusted in the practice - the head guy , but not the guy that did my surgery ) that neither one of my levels have fused, even thou i was told the one level did, but that doesnt matter now., they want to do a two level plif... and im at the point right now, i cant stand the thought of going thru this all again. i practically can do nothing right now i have so much back pain, every little movement i make kills me., doc said neither level is fused, and i have a screw going right thru the l3-4 right sided faced joint... so all needs to be removed and a two level plif needs to be done, and he feels the rsd will not get worse., but ive been in so much pain for the last year and a half and had so many facet steroid injections (which are starting not to work anymore) im just plain unable at this point to schedule a second surgery, i remember what i went thru after the first one, ( and right before the first surgery i had a coloectomy - removal of my entire large intestine - so that didnt make things easier for me - i get seconds to go get to a bathroom now) but the pain i went thru - i dont know if i can back and do it all again - i know a plif is far worse recovery wise than the xlif, and my xlif what not an easy recovery.... im unsure what to do right now, the rsd is a big scare for me at this point....

    im just looking for peoples similar issues with the same problem.... and tamtam the reason for the problem with the arm was the doc said from being taped to the slant table for such a long time for the xlif surgery - which the go thru the right side of your waist so i was taped left shoulder into the table... he said thats why i probably had the problems..... but it took 8 weeks to get use of my arm after the surgery.. it took a long long time.

    i appreciate your posts.... please if you can offer any advice .... i want to read what you have to say!
  • I know that the thought of surgery and the thought of the RSD spreading, is daunting to say the least. The question I have for you, is "can you live the rest of your life the way you are right at this moment?"

    The reason I ask that, is because if your life is at a standstill right now, isn't it worth entertaining the thought that it may be possible to improve on it? Is the thought of less pain and better functionality worth the temporary post op pain and the risk that the RSD might spread?

    Say you have the surgery and your pain levels drop and the RSD stays in check ... would that be something worth a few months of additional discomfort?

    I wish I had the power to make this all better for you and take away the pain and the fear. Unfortunately I don't. I do however have the ability to be here for you, to support whatever decision you make and to share my experience, strength and hope with you.

    Hang in there,

  • "c"

    i think about what you have said here every day, it would be worth it....if it was guaranteed!!!

    i never thought i would be this bad after the first one., and there is the same possiblity it could be worse than this the second time.... it is possible!!

    and yes it is possible, that my back pain could get better and the RSD wont spread, yes i understand this also is possible....

    i know i have the better surgeon this time, i had the new doctor in the practice for the first surgery and i was his FIRST XLIF surgery..... not even ofjust a level or two, his first ever....

    my surgeon now has never done a XLIF, but it doesnt matter in the area i live he is one of the best two neurogeons we have in the area.....

    if i could go back i would of wished he had done my surgery and he had made the decision whether it should of been an xlif, or a plif, he has commented that it should of been a plif.... but that doesnt help me now

    for going in with a back surgery, i never expected to walk out with my left arm and left foot paralyzed, it took 8 weeks to get my arm back and i still have problems to this day, i never knew of what RSD was, or that it was something i might even get after surgery, no clue on that one... and to find out after i was told one of my two levels had fused, to find out two weeks ago that neither level has fused , and the screw is misplaced at the one level, i have been misinformed the entire way, and its a lot to put my faith in this process right now.....

    i know there are possiblities good and bad, i just dont know which side i should be on, or how this play out... i have time to think, because with the joys of health care fees right now, i cant afford the surgery this year anyway, so january would be the earliest i could even think about it...

    that is why i am here, talking to people whom have gone thru similar things.... i need peoples advice, i want to know what others have been thru, i understand every case is different., but i cant make a wrong decision again, i cant afford to get any worse than i am right now.......

    all i do is think right now about what to do ... and play out the two sides of this...... : (
  • Yikes I wish I had some good answers for you. I know how consuming it is when you can't take action on the situation and have only time to think. That's not good for the situation either. I wish that you could find at least one good and distracting thing to focus on so that you can give yourself a break.

    I don't know that any doc is going to be able to give you a guarantee. With medicine and spine surgery, is there really ever a cut and dry case?

    Anyway, I hope you can find some answers.

  • c

    thank you!!!!!!!!!! i need guidance, and i hope to find the answers over the next few months!!!
  • Tammy I really get the RSD as that is exactly where mine is located. Here is all i can offer you is i beat it into remission one time, they had to open my foot up to fix the bone and got it right back, same year. It was brutally i would be lying if i didn't say that. But the fact was if I didn't get better from what it did i was going to loose lots more. Then about two years ago I broke of all things that same ankle, had to be surgically repaired.We all waited for it to rare its nasty head, but i started moving the ankle immediately following surgery. Of all things to have to move a ankle surgically repaired. I once again got lucky while it appeared it was coming on full force it went back in submission. We now know it is sitting under the plate by the scans and the pooling on the up take. But you know what I need more foot surgery. I may have damaged some nerves by putting off the surgery and I am seriously making a go of it, I think. Have to address a knee issue first. My point is don't let that disease beat you and keep you from a happier life.

    As C said this whole board will be here cheering you on and helping you out. You indeed have had a very complicated case maybe this is your break. Sounds like the last two years have been brutal. Oh one thing I wanted to mention is look into fusion self absorbing. They can look fused and then absorb back in the body it is rare but it could have happened. Also I wonder if it is possible for you to go to a bigger city and get a few more opinions sense you won't have surgery till january. You could check with some major facilities and see if they have someone researching RSD. There are some studies they can look at. In my experience while many docs know what it is, sense it is not common they don't research to much. So maybe in a larger city you could get someone who is doing research to look directly at your case. Someone suggested the RSD web site might be a great resource to use. Just some ideas. I hate to see someone in such pain and the fear of getting it back, I know that fear and it is real. I have had so many surgeries after getting it and been lucky so far it has not surfaced to any other place. But why all my docs know the importance of me moving right after surgery, it is a must. So some more things you might want to talk with to your surgeon, about how soon they could get a therapist to at least move the affected region and how often. Keep in mind the key is movement with the disease.

    I know all of this is so stressing on you right now and i am sure not doing your over all health any good. I do hope you find answers some place out there. Keep me posted how you get along, as a fellow rsd patient i really understand your frustration. I prefer to call it the disease of ignorance, meaning it is not logical at all what happens, just ignorant pain is all.
  • thanks tamtam.... at this appointment i am awaiting the MRI for the shoulder that was damaged during the surgery... then after that i have to meet with the neurosurgeon and go thru all this again...

    i want to get a second opinion about the rsd alone, but my primary told me its hard to get doctors to do second opinions now... i will try and see what happens.

    i appreciate everyones post, this is such a hard decision i must make! and a plif doesnt thill me!!!!

    thank you everone for posting!
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