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  • #16
    Gardenia,

    Good to hear you're starting to transition off the heavy meds. Add up how much Tylenol you're taking, including what's in Vicoden (acidominifen, I believe, is the same as Tylenol). It should be kept under 3000 mg per day to avoid liver toxicity.

    I hope you get to see the coast!

    Evelyn
    age 48
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
    Not "confused" anymore, but don't know how to change my username.

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    • #17
      Hi Gardenia,

      It sounds like you are progressing very well. The strange sensations in the back take a long time to go away...but over time you may notice them less.

      You can ask about Tramadol if they cut you off the Vicodin. It is a very mild pain med, not really classified as a narcotic (but not an anti-inflammatory either). I found it helpful for the extended "aches and pains" which for me, started to really decrease significantly around 4 months.

      Keep up the good work!
      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

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      • #18
        Have hope!

        Hi, Patty - I think I've come late to this conversation, but I am very sorry to hear about how much pain you are in. My first surgery, back in 1999, was because I had ruptured/herniated 5 discs and the curvature was progressing rapidly (adult onset). (I have since had six surgeries, including broken rods, revision surgeries and staph infection.) I had gone for more than 10 years with several discs herniated, and although it seems like lying still is the best, it's really not because unless you're floating in a pool, there is still stress on those vertebrae. I'm glad the injection gave you some relief. I've had several in my neck and got relief, too. Have you also considered physical therapy - particularly one with specializations in manual manipulation? Or a water therapist? Both these things could not only help with your pain, they could alleviate the herniation itself. Both have worked miracles for me over the years. Also, if you haven't done so, you may want to consider meditation or mind/body therapies to help you with the anxiety. When you're under stress, your immune system is depleted - and you don't want to go into this kind of surgery this way. All that said, please have hope! Many of us on this forum keep moving through more pain, more surgeries -- and we're still moving!
        Fused T10-S1 and C5-7
        Adult Onset at 25, with first surgery at 38
        Six total surgeries, including one for staph infection
        Found relief from pain without pills

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        • #19
          E-mail

          Patty, I tried to PM you, but for some reason nothing will go through. I'v been trying for several weeks. My e-mail is pjbj@gwtc.net. I hope you are doing fine and I felt terrible about your brother in law. So looking forward to hearing from you. I'v been wanting to say thanks for so kindly stopping in to see my husband in the waiting room during my surgery. I felt bad I couldn't see you the night before. Anyway, hang in there and God Bless! Linda
          Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
          Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
          This started adult onset scoliosis
          July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
          Oct.20th 2010, extended rods to T4 / did osteotomy at L3
          Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
          May 30th 2013 revision
          May 8th cervicle surgery 2016
          May 31st Dr. Gupta revision 2017

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