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Newly Diagnosed 8yo and overwhelmed

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  • Newly Diagnosed 8yo and overwhelmed

    Hello all, my daughter Jillian was dx on Dec 5th with a 47 degree right thorasic curve. It was initially found on a well visit. Her first set of xrays showed the curve and physical exam showed a trunk rotation of 16 degrees. To look at her now, I feel horrified I never picked this up, how could I have missed this?? We were fortunate enough to see Dr Betz at Shriner's hospital yesterday! I can not say enough how wonderful Dr Betz and his team were, especially Janet. Without a doubt, I know Jillian will be well cared for!
    Dr Betz ordered a a new set of xrays and confirmed a right thorasic 48 degree curve and a 28 degree compensitory lumbar curve. Her trunk rotation did increase from 16 to 20 degrees in the matter of 3 weeks??? Dr Betz and Dr Samdani discussed her case right in the room which I thought was wonderful and decided that Jillian would be a perfect candidate for the tethering procedure around age 10. From what I understood, her curve is too advanced right now for the VBS but her spine is very flexible which is good. She was measured for the Boston brace and placed on the surgical waiting list. I pray that this brace controls her curve enough to prevent the tethering. I know I need to be educated on this procedure but only 9 tethering procedures have been performed at this point.
    Has anyone else been in this situation with a young child with a large curve and if so how did your plan of care progress? Any information would truly be appreciated!

  • #2
    I don't know much about that process but wanted to reach out as one parent to another to say I'm sorry you & Jilly are going thru this, I'm glad you found the forum as there are some good people w great input - Linda for one should be a huge help. prayers & best wishes for comfort & discernment as you go thru it all.
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"


    • #3
      Hi. I am sorry about the diagnosis. I was waiting for some parents of kids with JIS to chime in but I don't think any have any experience with tethering.

      There are definitely some JIS kids who have been braced successfully, at least prior to the adolescent growth spurt. It appears far more successful than bracing in AIS just form the testimonials.

      Nobody is better than Betz/Samdani. You are at the pinnacle for JIS as far as I know.

      Good luck.
      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."


      • #4
        Thank you all for the means a lot!


        • #5
          Hi, our daughter was diagnosed at about 7 yo and her curve quickly increased from 25* to 35* despite night-time bracing. We did consider VBS at Shriners but, as you can see from my signature, decided to try full-time bracing (Rigo-Cheneau brace, not Boston brace). It worked very well for her. For the last 2 years about, she has just worn the brace at night again. I do not know anything about tethering but am happy to try to answer any other questions you have if I can. You can PM me. Hang in there

          G diagnosed 6/08 at almost 7 with 25*
          Providence night brace, increased to 35*
          Rigo-Cheneau brace full-time 12/08-4/10
          14* at 10/09 OOB x-ray
          11* at 4/10 OOB x-ray
          Wearing R-C part-time since 4/10
          latest OOB xray 5/14 13*
          currently going on 13 yrs old

          I no longer participate in this forum though I will update signature from time to time with status


          • #6
            Hi Elaine,

            Yes, you are right - I can tell you from experience (8 years' worth) that Jillian will be extremely well cared for. I would advise you to try take it one day and a time and see how Jillian responds to bracing. Rest assured that Dr. Betz, Dr. Samdani and the rest of the spine team, one of the best in the country IMHO, will be on top of her progress, good or bad, and offer appropriate alternatives if need be. They never rush anyone into surgery, but rather offer that option only if and when it's the right thing to do in their collective opinion.

            I know it's easier said than done, but try not to think too much about what might be until you see which direction things are going - and maybe see where things stand in, say, 6-12 months. You'll probably have a much better idea about what your options are at that point. In the meantime, hang in there and know we are here for you.

            p.s. I think you've also been on the VBS site - there are a couple of parents there whose children had tethering surgery (one in Philly and one by Dr. Newton in CA, I believe) and so far both children are doing extremely well. That said, I realize it's very scary with something so new, although a lot of the principles are similar to VBS which has been around somewhat longer (10-12 years).

            Best of luck and please keep us posted.
            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)




            • #7
              Have you looked into other options?

              Hi there,

              I can completely relate to the overwhelming feeling that you have right now with the possibility of surgery in your 8 year old daughter. My daughter was diagnosed at the age of 6 with a curvature of 42 degrees. With this age and severe curve, it really isn't a matter of "if" but a matter of "when" they will have surgery. After extensive research, we decided to pursue the SpineCor brace for our daughter. Since this time, she has been stable at a curvature of 25 degrees and keep hoping that she will persist at this stage through her growth spurt when she can undergo surgery after she has finished growing. I am not sure where you live but it might be worthwhile looking into this option for your daughter, especially if the curve is flexible, which is a positive predictor sign for response to this brace. Given our daughter was diagnosed so early, as with your daughter, we decided to go right to the orthopaedic surgeons that developed the brace since this brace is used worldwide by many, including chiropracters. Given most of the evidence is with adolescence, we wanted to go where there was more experience with the younger age group. We, in fact, are going tomorrow for a f/u appointment and hoping that she is still stable with a curve less than 30 degrees.
              If you want to learn more and would like to speak directly to me, feel free to contact me at my direct email at

              Good luck. Try not to be too hard on yourself as we are not trained as parents to look for these things because it isn't something that we would expect to happen.

              p.s. I have never heard of tethering, so I can not comment on this at all. My apologies..


              • #8

                I'm glad your daughter's curve has remained stable!

                I wanted to mention, though, that while bracing is probably a very prudent course of action for a growing child with a 23 degree curve, for kids like Jillian and my son, who started out with curves of 40 or 40+, most orthos will tell you that bracing isn't likely to be as effective. I think that Spinecor (not unilke other braces) has had the most success on younger kids with smaller curves. In fact, while I'm sure it's true, as you say, that flexibility is a positive predictor sign for success with Spinecor, flexibility is often a positive predictor sign for success with any brace. Even with VBS, one thing they look at is flexibilty. I guess what I am saying is that the more flexible one's curve is, the more chance it will respond to any form of treatment, which is a good thing as it leaves many options open for these children.
                Last edited by mariaf; 01-16-2012, 11:13 PM.
                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)