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I need scoliosis information

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  • I need scoliosis information

    I've had scolios surgery and I have some family members who don't understand what scoliosis is. I've tried to explain it to them (it's a long story) but they don't believe me and think I'm milking my situation, faking it, and taking advantage of everyone. I would like to get any information on: What scoliosis is. What causes it. Why surgery is done when a curve gets so bad. What kinds of damage scoliosis does on the body. What kind of a recovery a person can expect when they have had scoliosis.
    Pretty much I'd really appreciate it if anyone could give me any information they have about scoliosis, so that I can try and explain to my family members that I'm not trying to fake it, milk it or anything like that.....all I'm trying to do is heal from some major surgeries.
    Ellen

  • #2
    y dont u show them your xrays..??
    ~Wanda~
    Age: 18
    40TL curve pre op
    Posterior Spinal Fusion with Dr. Pablo Marrero
    San Jorge Children's Hospital in Puerto Rico
    June 7, 2006
    post op curve: 16

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    • #3
      Hi Ellen,

      There are several websites that explain (in plain English) what scoliosis is and what its implications are/can be. One is http://www.iscoliosis.com

      Also, at the University of Utah they are doing a long term study on the genetic component (if any) to scoliosis.

      Let me know if I can help in any way. Two of my three children have scoliosis. The scoliosis is not related at all. One has idiopathic scoliosis (the common teenage scoliosis) and the other was born with congenital scoliosis.

      Good luck! I hope your family understands soon.
      Carmell
      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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      • #4
        scoliosis info

        This is from the NSF website found if you click "NSF" at bottom of page and click-"resources"


        http://www.scoliosis.org/resources/medicalupdates.php
        Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
        Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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        • #5
          Scoligal

          That's the truly ironic part. I've shown them every x-ray that I've had. I had a "talk" with them the other day. Sad to say, but they just don't care. On the good side is that I have a wonderful and caring support system on my side of the family.
          I appreciate you for chatting with me.
          Ellen

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          • #6
            Carmell

            Thank you for your the website. It was what I was looking for. I did chat with the family members and sadly, they don't care. I do have a very great support system in my side of the family, my friends, and my neighborhood; without them I'd be lost.
            With me, we aren't sure where the scoliosis comes from. I'm the only one who has it. I've had it since I was 15. They braced me then, but the curves got bad. We didn't do surgery, though we should have. Since November of 2003, I have ended up having 6 surgeries on my back to try and heal. I've had a total spine fusion. It's been a tough road. My husband has been deployed to Afghanistan and Iraq through all of it and we have three small children.
            I found this website and it was if I had found Gold.
            I really appreciate your chatting with me.
            Ellen

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            • #7
              Karen Ocker

              Thank you for your information. I appreciated it
              Ellen

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