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14 years post-op and scared again!

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  • 14 years post-op and scared again!

    Hi everyone,
    I am new to this forum, although I have read many of your posts previously. I usually end up in tears, just reading that other people have been or are going through similar circumstances.

    It's now over 14 years since my operation to correct a 52 degree curve and I have rods from T9 to L4. For the past 3 months, I have had chronic muscle spasm in my right gluteal muscle and left side of my back where the fusion is causing me to cripple over and not be able to stand up straight again until the spasm releases. I have had moments where I felt so scared that I'd have to have another operation and that it is all related to my scoliosis.

    I have been seeing physiotherapists, and finally found one that was 'in-tune' with my body. (One therapist tried pulling my right leg... yanking it - I don't know what that was supposed to do exactly???)

    Anyway, I had a bone scan done last week and It looks as though I have either a disc disease or bony stress reaction. Has anyone had these conditions? Could you enlighten me on what may be involved in the way of treatment?

    I also work at a desk job - sitting most of the day, I think I may have to give this up as sitting makes the pain and muscle spasms worse. Anyone have a similar problem with sitting?

  • #2
    Welcome to the forum. If it helps I have the sitting problem myself. I seem to stand much better than sit. My muscles go nuts when I sit. For some reason my tail bone seems to conduct some kind of pressure all the way to my neck and that sets off the muscles. I have tried the donut thing and it works for a while. My doctor put me on a muscle relaxent and that too works. The down side is thay make me sleepy. The best fix I have found is to ice the muscle a few times a day and that seems to be the best thing I can do. The doctor told me it is common for this to happen for a long time during the rehab period.
    Sorry I have no answer for you, just a tip or two on getting things to calm down for an hour or two. I am sure when I am done feeding you all my BS someone will give you the answer you are looking for.
    My best and good luck,
    Jess
    March 23, 2006 Anterior/posterior Ileum-T2
    15 1/2 Hours
    Dr. Tom Lowe R.I.P.

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    • #3
      I would suggest seeing a spine specialist. Like you, my panic attack started in mid March (you can see my original posting date. I didn't see a spine specialist til end of June...but when I finally did I did get some answers to my pain. Not the answers I necessarily wanted to hear or see but it was worth it. Now I know the pain is not in my head ... it's real. I do have degenerative discs but I don't know what the treatment for that is yet...I still need to inquire further. (I saw there was a posting on that today with another help group...I may investigate further).

      Good luck and welcome!

      Always Smilin'
      Colleen

      1982 fused T2-L1
      pre op 45 - post op 33 (left thoracic)
      pre op 53 - post op 18 (right thoracic)

      recheck 2006
      right thoracic 57
      lower lumbar 34

      surgical revision April 28,2009
      revision T3-L1; new fusion L1-L4
      unsure of degrees at this point

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      • #4
        Be strong

        I'm fused T9-L4 also, my surgery was 23 years ago. It sounds like you have 2 problems going on here, imo:

        1) Muscle spasms: Back in 1990 I started having terrible muscle spasms that would make it impossible to walk. I tried many things for relief. I got my spasms under control by first resting with hot & cold packs, taking muscle relaxants, and doing stretches with Physical Therapy. I still do my stretches (yoga based) multiple times during the day (especially the days I work at my desk job). The exercises include hamstrings stretches for your legs, and core strengthening execises. I can recommend a book if you are no longer seeing your Physiotherapist.

        2) Bone/Vertebrae problems: I have osteoporosis, and degenerative disk disease. I hear these are common when people have long fusions such as ours. If you think about it, all the work of the seven fused levels, is being done by a few unfused levels at the bottom, and top. The unfused levels are essentially aging many times faster then they should because they are seeing so much additional load & torsion. As far as treatment for this, I was told you can strengthen your bones through meds & load bearing exercise. I was also told you can "plump up" you disks (increasing the circulation & fluid level) by remaining active. My Dr. said my disks may not neccessarily get worse, but may not get better either. My Orthopaedic Surgeon said he could do a 360 cage fusion on the ufused lumbar region, but I'm going to put this off as long as I can.

        I hope this helps.

        Mary

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