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  • question about continued curve

    Hey all. I am not sure how to word this so bear with me....I am 19 and relativly pain free from my scoliosis. Once in awhile I have pain. I have a throracic (sp?) curve of about 54-55. I am done growing but my curve is getting worse. Would you have surgery now?
    (This will not hinder my desicion as it is already made. I am just curious as to what others think.

  • #2
    I'm glad to hear that you are just asking for others opinions, because the decision whether to have surgery and/or when is a decision that you need to make.

    Having said that, we opted to have my daughter's surgery done when she was 13 y.o., even though she never had pain, and have never regretted that decision. Jamie's main thoracic curve was 46* and her Kyphosis was 71* and even though she was also done growing, her curves continued to increase.

    Good luck with your decision. Remember to weigh all of your options.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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    • #3
      I wasn't done growing until I was almost 17 - maybe she really wasn't done growing? A doctor knows better than me, but just a thought!

      Also, I'm curious how many people out there this really happens to - where the curve continues to grow after surgery? Anyone know the % chance of that happening?

      I know this is a question for my doc, but I don't go back for 8 months or so. Just curious if anyone has asked this before.

      Jamie

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      • #4
        My curves were measured when I was 18 and a freshman in college. At they time, they measured between 55 and 65 degrees. I had no pain and was very active in sports at the time. The surgeon who measured me mentioned that a back brace or surgery were my only options. I told my parents that I was too young to have surgery on something that didn't bother me and that realistically, I was not going to wear a brace in college! After that, I really never gave my scoliosis much thought unless someone asked me about it. I played co-ed softball every year, went rollerblading, bike riding, skydiving and did anything and everything I wanted to do without any thought about my back.

        When I was 29 and went for my yearly physical, my height measured a 1/4 of an inch shorter than in previous years. The PA sent me to a women's bone and joint specialist who sent me to my surgeon. He measured my curves at 75 degrees each. It was obvious at that time that my curves were progressing and they chance of them not progressing without surgery were slim. After long talks with my surgeon, my family and family and friends who are in medical fields and some research, I decided to have the surgery. I wanted to do it before I had kids and before pain set in and while I was still young enough to recovery fairly quickly. It's worked out really well for me so far.

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        • #5
          Thank you for taking the time to reply. I am going in for surgery on July 13th.
          I guess the reason I am going in now is because I want it done while I am still young, don't have to worry about it later. I hope to god I don't need revision surgery later in life. To answer JamieAnn's question, the percentage of curves that continue to curve after growth if very small. It's pretty rare. I am a male, which scoliosis is rare in, and also it is continueing to curve, which is rare. Lucky me!!
          Last edited by lbloodojunkieg; 06-27-2006, 01:13 PM.

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          • #6
            Actually.. I was wondering what % of curves continue to grow after SURGERY. I actually think the progression of curves after growth (once at a certain degree) is quite normal. I was asking specifically about surgery...

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            • #7
              jamieann

              Hmmmmm..........I thought once you had surgery that STOPS the curve. The spine has no where to go because it's surrounded by metal rods. That's the only way to stop the curve and the reason why most people including myself have surgery to begin with. I could be wrong, but I hope not!
              Jenn
              37 y/o female
              60 degree lumbar
              45 degree thoracic
              1st time anterior/posterior surgery May 8th and 10th 2006
              T 5 to S 1
              NYC

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              • #8
                I read Snoopy's post wrong - I thought it said the curves continued to grow after surgery!

                Regardless, I have read about curves getting worse after surgery (or am I nuts)? So my question remains. But thanks for the reply - and you're right Summer, I would certainly hope that is never the case.

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                • #9
                  JamieAnn,

                  I reread my post because I didn't want people to think Jamie's Scoliosis had progressed after surgery. She was skeletally mature at the time of surgery--doctor x-rayed her hand to check the growth plate and she was measured every three months or so and hadn't grown at all in the 1 1/2 years before surgery.

                  You asked if curves and progress after surgery and yes, in a way they can. Jamie has both Scoliosis and Kyphosis, and she developed what the doctor calls "junctional Kyphosis" which simply means Kyphosis that develops after or because of surgery. Her original Kyphosis was in the thoracic area and now she has developed Kyphosis above the fusion. She is fused from T3-L2 and her new Kyphosis is from about C3 or C4 to T3. As for how often this happens, I can't say. I'm sure it is rare, but it happened to Jamie and also to another member of our support group. Really odd thing about that, Jamie was a teen when she had surgery and had Kyphosis before surgery and the other person is an adult without Kyphosis before surgery and both surgeries were done by different doctors at different hospitals.

                  Good news for Jamie is once she reached about 15 months post-op, her junctional Kyphosis has stopped progressing.

                  Mary Lou
                  Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

                  Comment


                  • #10
                    I have to say that really stinks...........to go through all this surgery and then the curve wiggles its way below and above the fusion? I can't even imagine having to go through this again and my prayers go out to those of you who had to experience that
                    Jenn
                    37 y/o female
                    60 degree lumbar
                    45 degree thoracic
                    1st time anterior/posterior surgery May 8th and 10th 2006
                    T 5 to S 1
                    NYC

                    Comment


                    • #11
                      Progression of curves after fusion surgery is relatively rare, as is development of new curves above or below the fusion.

                      --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


                      • #12
                        Originally posted by lbloodojunkieg
                        Hey all. I am not sure how to word this so bear with me....I am 19 and relativly pain free from my scoliosis. Once in awhile I have pain. I have a throracic (sp?) curve of about 54-55. I am done growing but my curve is getting worse. Would you have surgery now?
                        (This will not hinder my desicion as it is already made. I am just curious as to what others think.
                        Since you do ask for opinions, I'll share mine. I would wait, as I did at that age. I was scheduled for surgery at the age of 18(backed out the night before), when my thoracic curve measured at 60 degrees, and when I did decide to have surgery at 26, b/c of pain that STARTED to be a factor in my life, it was still 60 degrees and I had it measured and Xrays in three different hospitals, so in my case it didn't grow. My lumbar curve decreased in my teens and in between the time I got diagnosed at 12 and wore a brace for years until the age of 18(about the time I stopped growing), the thoracic curve had grown from 34 to 60. My reasoning to wait for surgery is ONLY when one is still very young, in no pain and it can still be done with great success in years later(twenties), b/c there are risks of revision for many things- plus losing some flexibility- wich happened to me nonetheless BUT at least I didn't have to bother with my back from ages 18 to 25, wich was great.

                        But your decision is your own, and you know the risks and will probably have to get surgery at some point, so you can do it now or wait a little wich is not that big of a difference. For me it was better, but this is you and your back and I wish you health and a straight back in the near future
                        Last edited by sweetness514; 06-29-2006, 04:27 PM.
                        35 y/old female from Montreal, Canada
                        Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
                        Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
                        Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
                        Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

                        Comment


                        • #13
                          Originally posted by JamieAnn
                          Actually.. I was wondering what % of curves continue to grow after SURGERY. I actually think the progression of curves after growth (once at a certain degree) is quite normal. I was asking specifically about surgery...
                          Maybe it happens when a fusion is not solid? I'm not an expert, and I can't say for sure if rods would prevent that.
                          35 y/old female from Montreal, Canada
                          Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
                          Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
                          Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
                          Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

                          Comment


                          • #14
                            WITHOUT hardware, the way fusions were done 50 years ago-my original operation- I lost correction. AND that was after spending a YEAR in a cast, unable to walk, for the fusion to solidify.

                            My spine has NOT lost correction in the 3 1/2 years since my revision.
                            (pedicle screws, laminar wires, Isola rods, pelvic screw and a cage).
                            No wonder my spine cannot go anywhere!!!
                            Last edited by Karen Ocker; 07-03-2006, 02:35 PM.
                            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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                            • #15
                              Hey Summer,
                              I just got back from P.T. and learned Kyphosis is something that is a possability above fusion. According to him we just need to stay flexable and strong to help to prevent this. Yes I agree it sucks thinking that future surgery might happen, however for me that is all the insentive I need to keep up on staying in shape. Future surgery is not a given, however you must keep your mind on preserving what is left and keep it in tip top condition. Lets focus on the positives! We are straight and tall again!!


                              MaryLou,
                              Did Jamie's P.T. inform you that kyphosis could occur above her fusion? Maybe she was more prone to it then others? I wonder if once you have it it is possable to have it re occur, more often then one who doesn't have it before surgery? Any thoughts on this?

                              Comment

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