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Post laminectomy syndrome/failed back syndrome dx for 6 mo p op pain?

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  • Post laminectomy syndrome/failed back syndrome dx for 6 mo p op pain?

    Hi,

    Dr. Bagley, who did my long fusion scoli surgery, has a hard and fast rule about dispensing post op pain meds. He routinely refers all patients requiring them for longer than three months to a pain clinic. I started at a local pain clinic two months ago. I had a lap in pain med prescriptions of a month...I would have been back to the emergency room for meds were it not for my wonderful primary care Doc who filled in for me until my pain Doc referral came through.

    So here is my question. I just looked at my official dx on my paperwork from the pain clinic. I have "post laminectomy syndrome. A google search turned up the fact that pls is also known as failed back syndrome.
    Can it be possible that means my scoli surgery is a failure? How can they know that when I am only six months post op? They are always wanting to load me down with more pain meds than I need, wanting me to do the extended release type which gives me no ability to adjust my dose downward as needed, not being willing to prescribe tramadol, etc. I am having pain in or around a rib that goes from my breastbone to my spine. It is just above where the apex of my lower scoli curve. The pain has been decreasing since surgery. It reminds me of the bear claw thing I have read about others having, only it's just on half of my ribcage. I had assumed that it would continue to improve, but when I saw my pain Doc last week he suggested I go back to Dr. Bagley and have him drill a hole in the fusion to reach the nerve and treat it. What? Drill a hole where? Why? Up until I read this dx, I thought he knew what he was saying. He mentioned the hole drilling as I was leaving. I have done a search on the forum for more info on this dx but did not find it. I will further search.

    Thanks everyone for your comments. Have a joyous Holiday Season.
    Wendy
    Fusion T6 to S2 with Dr. Carlos Bagley,
    Duke Spine Center
    Surgery Date June 21, 2013

  • #2
    Well, think I figured it out. I looked a little bit closer at my paperwork. I think the dx is more about having a code to use for the benefit of the ins. co. than what I have. Over reaction still at work.
    Wendy
    Fusion T6 to S2 with Dr. Carlos Bagley,
    Duke Spine Center
    Surgery Date June 21, 2013

    Comment


    • #3
      Hi Wendy,

      I am concerned after reading your post…it sounds like your pain management clinic is less than competent. The part about drilling a hole in your fusion to get to your rib nerve is totally ridiculous. And your diagnosis does not sound like post-laminectomy syndrome because you did not HAVE a laminectomy. I think the pain clinic is not educated enough to treat your pain or comment about your surgery.

      Also, they should not insist on long-acting pain meds when that is not what you want or think is helpful. Many people on this forum took pain meds for a lot longer than 3 months, and I think it is incredibly cruel that some surgeons decline to prescribe the meds after 3 months, period. You are far from healed at 3 months, or even 6 months. Would it be possible for your primary care MD to prescribe your meds? That would be a good scenario if they did. I don't think your pain clinic knows what they are doing, honestly.

      Good luck, and please do not get discouraged. You will get off the meds when your body decides it's time, and there is no rushing that time. It does not make you a bad person or mean your surgery was a failure if you are still taking meds at this point.

      Hang in there,
      Gayle, age 50
      Oct 2010 fusion T8-sacrum w/ pelvic fixation
      Feb 2012 lumbar revision for broken rods @ L2-3-4
      Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


      mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
      2010 VBS Dr Luhmann Shriners St Louis
      2017 curves stable/skeletely mature

      also mom of Torrey, 12 y/o son, 16* T, stable

      Comment


      • #4
        Wendy...

        Did you have a laminectomy or laminotomy in the past, before your scoliosis surgery? Post-laminectomy syndrome is a cause for scoliosis.

        --Linda
        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
        ---------------------------------------------------------------------------------------------------------------------------------------------------
        Surgery 2/10/93 A/P fusion T4-L3
        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

        Comment


        • #5
          No, Linda, this is my first back surgery. And Leah, I agree. I think in NC there has been a real tightening of laws for prescription pain meds. My poor Primary Care Doc almost had a heart attack when I asked him to prescribe for me...he even mentioned the "narcs" looking at his documentation. I have to bring in my drug bottle and sit there while a nurse counts out my pills, then sign a paper she the witnesses. It's more about complying with the law than relieving pain. I am sure my primary care won't prescribe any more for me, and the only other pain clinics around here are chiropractors. I will ask my surgeon how he feels about someone drilling holes in my new fusion when I see him in February. And I will ask the pain Doc how those dx were developed. I know my body is beginning to back off the meds. I used to need 30 mg pr day, now I have a hard time taking more than 7.5 mg.

          Thanks!
          Wendy
          Fusion T6 to S2 with Dr. Carlos Bagley,
          Duke Spine Center
          Surgery Date June 21, 2013

          Comment


          • #6
            Wendy...

            A laminectomy is a form of decompression. It's a very common procedure, usually done to relieve stenosis. I just did a search on POST LAMINECTOMY SYNDROME, and found dozens of sites that essentially describe it as anything that causes long term pain after spine surgery. It's almost like they're using it when there's a presence of pain without a specific structural cause. I think that's how pain management doctors define it, but I don't think that's how most deformity surgeons define it. That definitely isn't how we use it at UCSF. What it is according to what I've been taught is the collapse of posterior elements of a vertebra on which a laminectomy has been performed, causing a deformity at that level. (If you've ever heard or read that a decompression alone on someone with scoliosis doesn't work, it's because of this issue. It almost always causes scoliosis curves to worsen.) By the way, many of us have had laminectomies as part of our scoliosis surgeries, but we don't collapse at the laminectomy because it is typically instrumented. Maybe your doctor is using the term like a pain specialist would, or maybe for some reason, they did a laminectomy at one level without instrumenting that level for some reason.

            --Linda
            Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
            ---------------------------------------------------------------------------------------------------------------------------------------------------
            Surgery 2/10/93 A/P fusion T4-L3
            Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

            Comment


            • #7
              Hi Linda,

              Good info. Yes, all five of my lumbar vertabres were decompressed and then instrumented. I was instrumented from S2 to T6. I had a fracture of L3 that caused a deformity, the apex of my lumbar curve was at L2 and L3. I fell off my treadmill and landed on my behind about a year ago, my machine was going 3.7 mph when it stopped for a second or two and then started again causing me to lose my balance and fall. I think the fracture was what caused my previously stable scoli to rapidly decline. When I saw my Surgeon, he said my case was "interesting" and an emergency, since I was developing weakness and pain in my whole lower half.

              I will ask about their diagnosis at my next visit.

              Thanks so much, Linda!
              Wendy
              Fusion T6 to S2 with Dr. Carlos Bagley,
              Duke Spine Center
              Surgery Date June 21, 2013

              Comment


              • #8
                "When I saw my Surgeon, he said my case was "interesting" and an emergency, since I was developing weakness and pain in my whole lower half. "


                I would have been flattered to be called "interesting". How did that strike you?

                Susan
                Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                2018: Removal L4,5 screw
                2021: Removal T1 screw & rod

                Comment


                • #9
                  To a doctor an interesting case is a challenging one they've not seen that often. I think it is a scary definition!
                  Wendy
                  Fusion T6 to S2 with Dr. Carlos Bagley,
                  Duke Spine Center
                  Surgery Date June 21, 2013

                  Comment

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