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Extending Fusion due to Adjacent Level disease?

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  • Extending Fusion due to Adjacent Level disease?

    I have visited this site many times in the past and this is my first time to post. I have been impressed with the caring and support I have seen (read!) and I now find myself wanting to seek others out that may have gone through what I am going through right now. Here's my history:
    T3-L3 fusion with Harrington Rod (single) at age 13. I am now 51.
    No real issues beyond some pain everyday and some "flare ups" that I have developed ways to cope with. At one point about 20 years ago with a flare up of pain in my right leg that was persistent, I had a CT which showed marked degeneration of the facets at L4. Duh. Was put on daily NSAID which I continue to take (Vioxx, Celebrex, and now Mobic). Fast forward to a few years ago and I had increased right lower back pain which I started seeing a massage therapist for and continue to do so with really good results.
    Back in July of last year, I noticed pain in my right groin that would head down my anterior thigh only while walking. My hubby convinced me to go have it checked out in November. I had hip xrays (mild arthritis) and xrays - the only thing different about the xrays from before is now the lower hook of the Harrington Rod rests on my L5 spinous process, so I've lost some height obviously in the adjacent level below the fusion. I underwent a CT Myelogram (wouldn't wish that on my worst enemy) and those results showed severe sclerotic changes, degeneration at L4. The right L4 foramen is somewhat collapsed and show bone spurs. My leg pain varies from "yes, it is there" to I can't walk hardly. I am scheduled for a selective nerve root block next week, so if my leg pain goes away, I am then assured it is the L4 nerve root exit problem. I was so hoping for a hip replacement instead - lesser of two evils, right?! Anyway, I am told the "fix" would be to fuse L4 to the sacrum, even though my L5-S1 space is fantastic.

    Has anyone out there faced this before? I would like to hear about your experiences and opinions.

    I know I have been extremely lucky given the circumstances; I am married, have 2 kids, 17 and 30, a nurse by education and a great job as a clinical manager with a medical device company. I work a lot with chronic pain patients, so I have a healthy aversion to taking any kind of pain medications on a routine basis. I have good benefits and a robust short and long term disability policies through work. I am truly blessed in that I can be off for many months if needed without a pay cut. So, work and economically speaking, I can undergo the surgery without much hassle. Emotionally and physically speaking, I am dragging my feet big time. I would appreciate any input you all may have!

  • #2
    Originally posted by robera2 View Post
    I have visited this site many times in the past and this is my first time to post. I have been impressed with the caring and support I have seen (read!) and I now find myself wanting to seek others out that may have gone through what I am going through right now. Here's my history:
    T3-L3 fusion with Harrington Rod (single) at age 13. I am now 51.
    No real issues beyond some pain everyday and some "flare ups" that I have developed ways to cope with. At one point about 20 years ago with a flare up of pain in my right leg that was persistent, I had a CT which showed marked degeneration of the facets at L4. Duh. Was put on daily NSAID which I continue to take (Vioxx, Celebrex, and now Mobic). Fast forward to a few years ago and I had increased right lower back pain which I started seeing a massage therapist for and continue to do so with really good results.
    Back in July of last year, I noticed pain in my right groin that would head down my anterior thigh only while walking. My hubby convinced me to go have it checked out in November. I had hip xrays (mild arthritis) and xrays - the only thing different about the xrays from before is now the lower hook of the Harrington Rod rests on my L5 spinous process, so I've lost some height obviously in the adjacent level below the fusion. I underwent a CT Myelogram (wouldn't wish that on my worst enemy) and those results showed severe sclerotic changes, degeneration at L4. The right L4 foramen is somewhat collapsed and show bone spurs. My leg pain varies from "yes, it is there" to I can't walk hardly. I am scheduled for a selective nerve root block next week, so if my leg pain goes away, I am then assured it is the L4 nerve root exit problem. I was so hoping for a hip replacement instead - lesser of two evils, right?! Anyway, I am told the "fix" would be to fuse L4 to the sacrum, even though my L5-S1 space is fantastic.

    Has anyone out there faced this before? I would like to hear about your experiences and opinions.

    I know I have been extremely lucky given the circumstances; I am married, have 2 kids, 17 and 30, a nurse by education and a great job as a clinical manager with a medical device company. I work a lot with chronic pain patients, so I have a healthy aversion to taking any kind of pain medications on a routine basis. I have good benefits and a robust short and long term disability policies through work. I am truly blessed in that I can be off for many months if needed without a pay cut. So, work and economically speaking, I can undergo the surgery without much hassle. Emotionally and physically speaking, I am dragging my feet big time. I would appreciate any input you all may have!
    Hi...

    Your recent history is almost identical to what I experienced About 8 years after my original surgery, I started having lower back pain again. I had pretty severe degeneration at L3-5. L5-S1 still looked good. I REALLY, REALLY didn't want to be fused to the sacrum, and I knew enough about the research to know that most people fused to L5 eventually go on to need fusion to the sacrum. I chose to not have surgery, hoping that I could either avoid more surgery altogether by keeping my core strong, or that new technology would come along that would allow the problem to be fixed without fusing L5-S1. The technology never happened, and I lost my core strength when I could no longer lie on the floor to do my exercise routine. I had bad right leg pain, and I knew that it was a race against time in terms of the leg pain becoming permanent. I finally had my fusion extended to the sacrum in early 2011.

    I dislike the lack of flexibility and really wish I had it back. With that said, I'd probably make the same decision today, because my back and radicular leg pain are gone.

    I hate that you don't really have a great option. As I like to say to my bosses (who are spine surgeons).... ROCK....YOU....HARD PLACE. With any luck, you'll retain more flexibility than I did. You're a lot younger than me, and probably thinner than I am. Those things will both work in your favor.

    Regards,
    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


    • #3
      2 months post op! Now fused T3 to sacrum

      I did have the selective nerve root injection in Janulary and it gave me complete pain relief of the groin and leg pain. I decided to go ahead with the surgery - anchoring into my existing fusion at L2 and fusing down to sacrum with pelvic fixation. It as a quality of life issue really. And, I wanted to put it all "to bed" so to speak while I was relatively young and had good bone density. We are planning a 25th anniversary trip to Europe next summer and wanted to be well healed by then!
      I had the surgery on March 23, was in ICU a couple of days and out of the hospital in 5. I was actually emailing and texting co-workers and friends the night of the surgery! Once the nurses got ahead of my pain, I really did fine. I still had the groin and leg pain the first month, but now it is. Almost completely gone. My back aches if I am too busy, but it is not the horrible pain that it was before. The surgeon had me off work until May 24, however, I was working from home on my computer pretty much after a week at home and I was able to be officially returned to work the end of April. I still get tired easily and have to take the occasional tramadol (got off those percocets as soon as I could!), but each week gets better.
      The fusion with pelvic fixation has really not changed how I go about my daily activities. I still put on shoes the same way as I did before surgery, for example. The biggest thing I miss is taking NSAIDs. The surgeon feels those slow the fusion process, and I feel I would be a lot less achy if I could take them! I'd rather take that than a pain pill.
      If anyone is facing something like this, it is scary, but I know if given the choice again, I would make the same decision.

      Comment


      • #4
        I was an NSAID user for many years, on and off, and feel the same way you do about them. Some could be slightly hard on the body, but they do work amazingly well for pain. I also feel the same way about percoset, they are soo... nasty. (smug face) There are many old posts here on NSAID usage “inhibiting” fusion.....

        Do try to take things easy.....recovery and healing is a slow process.

        Congratulations

        Ed
        49 yr old male, now 63, the new 64...
        Pre surgery curves T70,L70
        ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
        Dr Brett Menmuir St Marys Hospital Reno,Nevada

        Bending and twisting pics after full fusion
        http://www.scoliosis.org/forum/showt...on.&highlight=

        My x-rays
        http://www.scoliosis.org/forum/attac...2&d=1228779214

        http://www.scoliosis.org/forum/attac...3&d=1228779258

        Comment


        • #5
          Yay NSAIDS!

          4 months post op now, pain med free and NSAIDS back on board! I feel like a new person getting back on my regular medication, meloxicam. Working pretty much like before but with a lifting restriction of 15#, no repetitive bending, twisting, etc. My job doesn't require any of that so all is good. Next goal is to get back on our elliptical machine. I really got deconditioned (more so than usual!) this past year. The groin and leg ache just a little bit here and there and so does the back, but not nearly as bad as pre surgery. The issue I am having mostly is right scapular pain area - sometimes it even hurts to touch. I think I will start back with massage therapy soon for that. It is worrisome that it follows the T3,T4 dermatone which is the level adjacent above the original scoli surgery. I am refusing to think it is anything more than muscular! Any thoughts on that?

          Comment


          • #6
            3 years post op on extended fusion for adjacent level issues

            I think my back is doing great all things considered. Still working and if I overdo, a good night in bed fixes me up. No pain meds. However, have started having hip pain - definitely believe it is the actual joint giving me problems. I think it is FAI and I need to get to an ortho one of these days.
            My question is do you think it is from the decades of uneven legs and everything associated with scoliosis? Anyone with something like this?

            54 yrs old
            T4-L4 Harrington Rod age 13
            L2 to Sacrum fusion age 51

            Comment


            • #7
              Originally posted by robera2 View Post
              My question is do you think it is from the decades of uneven legs and everything associated with scoliosis? Anyone with something like this?
              This is a tough question. It's possible....there have been complaints of hip pain in the past after full fusion.

              Osteoarthritis or degenerative joint disease can play a part....(for hip pain) You might want to review the articles below.

              https://www.hss.edu/conditions_degen...s-overview.asp

              https://www.hss.edu/condition-list_osteoarthritis.asp

              You have done well!

              If you see a doctor about your hips, do let us know what he thinks.

              Ed
              49 yr old male, now 63, the new 64...
              Pre surgery curves T70,L70
              ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
              Dr Brett Menmuir St Marys Hospital Reno,Nevada

              Bending and twisting pics after full fusion
              http://www.scoliosis.org/forum/showt...on.&highlight=

              My x-rays
              http://www.scoliosis.org/forum/attac...2&d=1228779214

              http://www.scoliosis.org/forum/attac...3&d=1228779258

              Comment


              • #8
                Hi, I was fused to the sacrum a few years ago, then I had my left SI joint fused a year ago. However, I am still suffering with left hip pain, especially in bed at night. My spine consultant says my latest xray shows osteoarthritis of the hip joint and has referred me to a hip specialist. I have an appointment in 2 weeks so will see what he says.
                Juvenile Idiopathic Scoliosis diagnosed aged 6/7
                Milwaukee brace 1980 - 1984, Fused T2 - L3 with Harrington Rod 1984, 10 rib costoplasty 1999, artificial disc at L3/L4 2003, extended fusion to L5 2006.
                2015 - Sagittal plane imbalance correction by insertion of 30 degree hyperlordotic cage at L5/S1 level (anterior approach) with fixation to pelvis (posterior approach) now fused T2 to sacrum.
                2017 - October - SI joint fusion - left side
                2017 - December - Revision of failed left SI joint fusion

                Comment

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