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tcr1130ttcr1130 Posts: 122
edited 06/11/2012 - 8:51 AM in Back Surgery and Neck Surgery
hello everyone,

just want to share this info with everyone, and get peoples feedback on this, and how you would handle it:

i met with my pain management doctor today, had to get 6 facet joint injections for my pain., we were talking about his feelings on whether my rsd would get worse by having the plif done....

he surprised me with a bit of news, that i was not told at the time of my surgery, or have heard anything about it to this day...

he said they are finding that people that have XLIF's are prone to having nerve problems (ex. rsd) after the surgery!!!! to me this is an unnerving piece of information.....

sitting here wondering what to do this info..... under no way should i of had to have s spinal stimulator surgery placed in, which i will have to have i hear every 5 - 7 years redone, to replace the battery in it.... this sounds very wrong and am not thrilled with this information at all

any thoughts anyone!? has anyone else been told this..

how convenient after my surgery for my xlif, and spinal stim surgrey, and getting ready to have a plif, am i told that a lot of what i am going thru was because of a risk that was know about XLIF's and not informed to myself.....

had he just done the plif, i wouldnt be going thru any of this., but now the rest of my life i have to deal with rsd, and after two years, it is occasionally going into the left leg!!??

thoughts please


  • Did your pain mgmt doc seem to have any idea how or why this is happening? Is this exclusive to XLIF's? I had a PLIF about 11 weeks ago and have more nerve issues in my leg now than I had before surgery...makes me curious...
  • he did say they are finding it exclusively in xlifs, because of the side entrance , so which ever side the doctor uses they are finding the patient to have ( if they get rsd ) rsd forming on that side., i had to also ask him why im getting copycat pain on the other leg sometimes, and he told me today that can happen also, where it can go into another limb, so all he could say for that was to use the stimulator for both legs instead of the one that the problem is originally in!!!!

    he feels that having the plif would not cause the RSD to get any worse, he felt it would only get worse if i had to have surgery in the actual limb that has the RSD in, and he said that they have to do sometype of spinal block during the procedure to aid a patient that has rsd to have surgery in that affected area., since im not having leg surgery he feels i would be okay having the plif., other neurosurgeons in other practices dont agree with that about the plif not possibly causing the RSD to get worse, so that is still a crap shot at this time....
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  • I guess I would do some reasearch to find studies done on this. I think RSD can be caused by many different things. I too have RSD (my doctors now call it CRPS) in my left arm. Maybe my neck surgeries had something to do with it, but even if I had known that this was a risk, I still would have chosen surgery.

    Would you have not had the surgery or spinal cord stim implant if you had known there was a risk of getting RSD? I think we all are in a state of trying to find relief in whatever way we can.

    I guess I only ask this because I had a severe complication with my first neck surgery. My cord was actually damaged during the procedure that was supposed to fix me. I wasted a lot of energy being angry with the doctor until I realized that being concerned over how or why things happened doesn't really change the outcome. The doctor did not intentionally make me worse. It was better for me to focus my energy on making the best of my situation.

    Interestingly, my doctor offered the SCS to me, but then later changed his mind stating that a pain pump would be better for me. Maybe he changed his mind because of the RSD stuff?

    It will be interesting to see what others have to say, and if you find any research regarding this issue. So when is your upcoming surgery?

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I only say this because my doctor said they are finding it specific to XLIF's

    my doctor waffled between an xlif and plif till the day before my surgery, he wasnt sure which he would do.... and i only had to have the spinal stim sugery because the RSD was so bad...... so my RSD started right after my xlif., and would i had the xlif had i known this was even a possiblity .... NO.. i would of had the plif., that was the surgery that should of been done, its the surgery the head surgeon believes i should of had., and this particular doctor was trying to bring a lot of xlif's to the practice., and as i stated i was his first one., and even told me at one point before he left the practice, the RSD likely started because of how they had to overstretch the area to get in, and because i was in that position way past the alotted time for the surgery, so the surgeon that did admits how it happened, and well respected pain management physician, says they are finding this problem because of people that had Xlifs, and the med's, injections and stim surgery are all because of the experiment procedure XLIF..

    im sure there are many that had successful XLIF's, but all he was saying, is that they are finding this a pattern for people that have had xlif's that they are having this problem as a result of the surgery.

    hope this helped explain it better, my PLIF, im hoping i will have the money to do it this fall., they are buying me time with the shots, but they wont give me help much longer, i have been getting them for over a year, and have to live with my original brace on every day.... there is severly bad placement of 3 of the 4 screws, with the three directly in to the facet joints, so that is what caused the back pain, but the rsd is definitely a result of the XLIF procedure..... unfortunately - its information people should be told before the surgery,
  • I am so sorry for your situation. I think it is great that you want to get the word out, because all too often we have no idea what we could be getting into. Maybe you will save someone else from going through the same things you are. Stay strong.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
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  • I can only comment on the RSD. As I got it from a foot surgery. Not the actually surgery, but the when they removed the pins they had put in. I can tell you the one important most important thing is to get the joint involved moving. The longer it doesn't move the worse it gets. I think the blocks you are talking about are sympathetic nerve blocks. I actually had more than my fair share of them along with tons of therapy, touch sensation and meds to help it. At this point and time my RSD has gone in remission. But for me it was so bad even a shower felt as though someone was throwing needles at me. I would just scream putting a sock on. But as Cindy said I would focus on the treatment of the RSD and what you need to get your back better. Did they do a bone scan to confirm the RSD? Have they been putting sympathetic blocks in? Those can all be done now.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,745
    I had one in 2010. I do not have RSD.or any other complications from the surgery. Believe me I do have many problems. But not from the XLIF. They were from a 3 level ant. post. 360. And a single level PLIF.
    My surgeon had done well over 100. And I never would have had surgery from a surgeon who was doing his first XLIF... on me! :jawdrop:
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,745
    Did they use the nuvasive nerve monitoring system?
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • Jim

    I dont know if they did or not!??
  • im well past the stages of doing all the testing to prove the RSD and i have done all the treatments, thats why I finally had the spinal stimulator surgery last xmas....... i have had two sympathetic nerve blocks, and i get facet joint shots 6 of them every two months ( these are only to help with the back pain) everything else was for the RSD, so I am well past the point of diagnosis, and treatment... unless something new comes down the road for treatment, they are doing everything they have the ability to do at this point!!!!!

    Being this guys first patient wasnt a thrill for me either, but he had a well known neurologist in with him while he was doing my procedure, he is actually the neurosurgeon that performed a miracle for one of the buffalo bills players a few years back that they felt would never walk, it was very serious, so knowing this doctor was the teaching doctor gave me some confidence going in, but yes being a doctors first isnt the best situation, .. that i cant go back in change, but i can tell you my doctor running the show now kind of saw his mouth drop a little when he saw what kind of condition this guy left me in, as he left the practice with little forwarning to the office - so i dont know what went all with that, and no one in the office really understood why he was leaving so quickly, but he was in awh that he had left me visit after visit and did nothing, knowing that i had these three screws in the facet joints and i wasnt fused at either levels., he had told i had fused at one level and all the screws looked good..... i didnt find out how bad it was till i met with the new doctor, and he showed myself and my husband what was really going on......

    i should of stuck with my instinct, because after surgery and i got wheeled up to my room, he looked at my husband and I and said he may have to take me right back downstairs to open me back up again that one of the screws looked like it could be impinging on the cord area.. he came in later that evening and said they were going to wait and see what happened.!!!!!well this is what happened!!!! i've had a bone stimulator on for almost a year, i still, two years later, have to wear that back brace everyday. I take pain meds for the pain in my back and my rsd, and then I have to deal with all the stuff with the RSD....... so its just my story, but, I just want people to know this before considering an xlif., they go near the sympathetic nerve and they are finding these XLIF's to be causing RSD because the nerve is getting damaged during surgery
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