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Conflicting 2nd opinion

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  • Conflicting 2nd opinion

    My 13-year-old daughter is scheduled for surgery this June. She had been braced for the last 2 years, and in spite of that she stands now at 33 degrees thoracic and 43 degrees lumbar (See attached pic). I just got a second opinion and this new doctor says no surgery is needed until the curve is over 50 degrees. I’m really confused! I’m leaning towards having the surgery done because: (1) The scoliosis has rapidly progressed, even with the brace worn full-time, and (2) these curves only get worse with time, and I might just be delaying the inevitable. The 2nd doctor says since my daughter is done growing (she got her period 1.5 years ago), she should only be put in observation.

    I just can’t handle this wait, knowing that is not going to get better. I also have conflicting thoughts about doing a surgery that is mostly cosmetic at this time, since my daughter does not complain of any serious pain. On the other hand, it would be nice to correct this, once and for all, and not to worry about it for years to come. Your thoughts and opinions are welcome!

    -JLP in Jacksonville, FL

  • #2
    I know exactly how you feel!

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    • #3
      My daughter had surgery a little over a year ago. She was 44/27 at the time they called for surgery. She wore the TSLO brace 18 months prior to surgery during her major growth spurt. And she wore it! Original curves were 40 and 35. The brace kept it from progressing while she was in brace. Once they released her to 18 hours a day in the brace she increased in the thoracic region. Once released from the brace because she was fully grown she kept on increasing. We chose to do the surgery while she was younger to help her not get any worse. Easier to correct when the bones are more flexable. They recover faster than an older person. We were also told that they have less going on in their lives at this point vs when they are older (I don't know about this one). We also have excellent insurance on her now and we feared that she may not have insurance later. Our insurance covered it despite the "low" number.

      You are welcome to pm me if you wish - Some have been shocked that the doctors opted for surgery at 44 degrees. They only corrected the top curve. She had an 8 degree gain from 23 hours in the brace to 18 hours and then 4 more degrees once it was removed in 2.5 to 3months time. We chose not to let it get worse.

      I hope that this helps you to at least feel that you are not alone. I might add that we were totally against having surgery from the very beginning.

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      • #4
        Some kids' curves continue to progress even after they are done growing. My daughter is one of them. Jamie's curve continued to progress even after she was done growing. Her curve was 46* at the time of surgery and she never complained of pain. Some doctors say surgery at 40* and others say 50*. Deciding to have surgery is always a tough decision. We've never regretted our decision.

        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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        • #5
          I would really like to see some retrospective studies on curve progression after maturity.

          The stories here are anecdotal but they don't seem consistent with the thought that curves less that ~50* will be stable though life.

          My one daughter is at 36* - 40* now. I suspect her chances of needing surgery at some point approach 100% either for increased curve or for the associated damage due to having a curve for years. The latter is well documented in my opinion based on the normal and average recovery times for adults vice children and the reason for the big difference.
          Last edited by Pooka1; 04-21-2009, 02:36 PM.
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #6
            Originally posted by Pooka1 View Post
            I would really like to see some retrospective studies on curve progression after maturity.

            The stories here are anecdotal but they don't seem consistent with the thought that curves less that ~50* will be stable though life.

            My one daughter is at 36* - 40* now. I suspect her chances of needing surgery at some point approach 100% either for increased curve or for the associated damage due to having a curve for years. The latter is well documented in my opinion based on the normal and average recovery times for adults vice children and the reason for the big difference.
            Sharon,
            I don't have time to worry about studies. I've always concentrated on what we were dealt. You can drive yourself crazy worrying about studies, whether or not your child will need surgery, whether your child is following the norm, etc. To me it's just not worth it.

            If you look at "Scoliosis Surgery: The Definitive Patient's Reference" (first edition) by David Wolpert, you'll find a chart showing the probability of curve progression before skeletal maturity. If the Cobb angle at initial detection is 30-59* and the child is between the ages of 10-12, there is a 90% chance of progression. That meant that Jamie had a 90% chance of progression because she was 12 at the time of diagnosis and her curve was 36*. Had she been diagnosed between 13-15 years of age, it would have dropped to 70% and had she been diagnosed at the age of 16, the chance of progression would have dropped to 30%.

            I know you'll debate this and that's not why I'm here. I'm not here to argue. I'm here to share my child's experience and what I've learned through that.

            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


            • #7
              I want to see stats on the probability of curve progression AFTER maturity. We hear one thing but the testimonials seem to paint a different picture.

              It is to say, I don't believe the claim that if you can keep a curve below ~50* at maturity, it will almost always be stable through life. That does not appear to be the case unless we have a very skewed groups here.
              Sharon, mother of identical twin girls with scoliosis

              No island of sanity.

              Question: What do you call alternative medicine that works?
              Answer: Medicine


              "We are all African."

              Comment


              • #8
                I just went through this with my 17 year-old daughter who had surgery June 18th. The Pediatric Ortho doc who had been following her since she was first diagnosed said the same thing -- wait until the curve was 50 degrees to do the surgery. So, we waited. But, once it was 50 degrees, he said continue to wait! Well, sometimes you have to go with what you feel is right and based on everything you know. At that point, I got two second opinions and from those two, my daughter and I selected her surgeon. In retrospect, I should have gotten the second opinions a little earlier because it takes time and by the time we got the second opinions and waited until school was over to schedule the surgery, her curve had gone to around 64 degrees. I would recommend that if the child is done growing (as my daughter was) and if the curve is worse at each visit then it probably won't "hold" at 50 degrees or below. I'm not saying necessarily to have the surgery at less than 50 degrees (50 seems to be the universal cut-off point) but to take steps for second opinions before it gets there. Also, sometimes if the kids have what they call a "stiff thoracic curve", generally determined by bending x-rays, the correction might be less.

                Comment


                • #9
                  Originally posted by Pooka1 View Post
                  I want to see stats on the probability of curve progression AFTER maturity. We hear one thing but the testimonials seem to paint a different picture.

                  It is to say, I don't believe the claim that if you can keep a curve below ~50* at maturity, it will almost always be stable through life. That does not appear to be the case unless we have a very skewed groups here.
                  Hi Sharon,

                  I understand what you are saying about the testimonials, but I believe that the folks who tend to come on these forums and support groups MAY represent the worst-case scenarios. Meaning, those who have not experienced any problems are most likely not seeking support, so the numbers could in fact be skewed in that respect, I don't know.

                  Just a thought.
                  mariaf305@yahoo.com
                  Mom to David, age 17, braced June 2000 to March 2004
                  Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                  https://www.facebook.com/groups/ScoliosisTethering/

                  http://pediatricspinefoundation.org/

                  Comment

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