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  • Newbie question

    I was wondering...how often does a brace usually need to be replaced? I have asked our doctor and the company that is making the brace for us but no one will commit to an answer. I understand why but I just want a general answer. Is it about once a year or more often.

    My daughter is 10 and has not hit puberty yet. She is rather tall already so I am expecting quite a bit of growth over the next couple of years.

  • #2
    I'm looking forward to the answer to your question. My daughter is two months into wearing a Charleston night-time bending brace.

    The last few nights it has been hurting her. She said she can't figure out how to get it on correctly (after doing so for several weeks with no problem).

    She is afraid her curve is getting larger.

    If the curve gets larger, do they change the brace to accommodate or do they give up on that brace? Why else would they change a brace?

    sharon
    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


    • #3
      Exactly!!!

      I just want some rough guidelines...the tech that I called said that if it was getting uncomfortable to come in and get checked. But how do you guage discomfort....not liking to wear it....just having a hormonal week...

      My daughter is VERY high maintenance and I don't want to disregard whining as a real issue by mistake.

      Comment


      • #4
        It takes quite a bit of vertical growth for a TLSO brace (our only bracing experience) to be too small. My daughter was 13 when she started wearing her brace. She had only one re-casted because the first one was too small. It was about a year after she was fit the first time.

        Each child grows differently. Your daughter is only 10yrs old, so the theory is she has quite a bit of vertical growth remaining (if she hasn't started menses and has a Risser of 0). She may need her brace redone in 6 months, or she may be able to wear the brace for 18-24 months with minor adjustments in between (not a new brace).

        You will know if the brace is too small if she gains quite a bit of weight and the brace will not fit around well, or if she grows taller and the markers where the orthotist said to put the brace is way out of bounds. If there are pressure points in the brace to push on the opposite sides of the curve, those pressure points will not be in the right position if the brace is too small. To make sure we had the brace fitting snug and tight (to get any benefit, it must be somewhat tight) the orthotist put red marker where we were to build up wearing time. The velcro straps on my daughters brace tightened over time (took a couple of weeks to get the correct wearing position).

        Braydon also wore a TLSO brace after his fusion surgery as an infant. He had 2 new braces made before 6 months because infants grow faster than pre-teens and some teens.

        Good luck. HTH
        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/

        Comment


        • #5
          I have offered to have her go into the orthotist and have him check the brace or just show her how to put it on again but she doesn't want to do that.

          I then offered to let her talk to him on the phone but she didn't want to do that either.

          If she gets sore from the brace again or continues to mention that she can't quite put it on correctly, I'm going to insist she go back.

          I have no idea what I'm doing.

          I was not able to go to the fitting appointment because I was bringing her sister home from the hospital after her fusion surgery. I'll see what my husband remembers from the appt..

          sharon
          Last edited by Pooka1; 06-05-2008, 06:16 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
            I am glad I am not the only one feeling lost. I am hoping to lose that feeling soon though. I can be pretty persistant with my questions when necessary. I just don't want to scare the doctors away just yet.

            Comment


            • #7
              My son wore a TLSO brace for about 3 1/2 years prior to his fusion surgery. It was supposed to stop the progression of his compensatory lumbar curve, only, because we were told there was nothing that could be done to stop the progression of his thoracic, congenital curve.

              He had a total of three braces during that time. We suspected that the brace was too small when it wouldn't close as tightly and when it became more irritating and just seemed not to fit anymore. For the first few years, his curves maintained themselves and the congenital curve even seemed to decrease sometimes.

              Finally, after an approximately 4 inch growth spurt when he was 11 yrs old, he couldn't comfortably wear the brace at all. We had to keep it really loose, we had to get the pad thickness decreased and we realized that his body's rotational forces were really fighting the brace and his compensatory curve, esp. was significantly increasing. He then required surgery.

              I wish you all the best with your daughters' braces. I know that they can be very challenging.
              Laurie

              Mother of Alexander & Zachary:
              Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
              Zach is 13 years old and very energetic.

              Comment


              • #8
                Sharon,

                Even though your daughter doesn't want to talk to or see the orthotist, you could still call him yourself. Since you weren't able to go to the first fitting appointment you might want to call or e-mail him and ask if he could give you instructions over the phone or if possible, in writing so you can try to help her put the brace on for a few nights. Has your husband tried to help her put the brace on or checked to make sure she is putting it on properly?

                Good luck. By the way, since your daughter is worried about her curve getting worse, wouldn't that be a reason for her to want to see the orthotist? At least if he thinks her curve is getting worse, he could recommend seeing the doctor or discuss switching braces. At least seeing him wouldn't leave your family alone to struggle with the brace.

                Mary Lou
                Last edited by Snoopy; 06-06-2008, 07:05 AM.
                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


                • #9
                  Hey Mary Lou,

                  Those are some good ideas. I don't know why things like that don't occur to me.

                  I'm first going to see what my husband remembers and have him help her tonight. He travels quite a bit for work but is home now.

                  I'm also going to call the orthotist and ask if he can send me written instructions as you mentioned. I keep wishing I was at that appointment and I think having written instructions will help me.

                  I may ask Willow if she wants to return to see if the orthotist thinks she needs a different brace. I don't think she will want to go for that reason, though. But if she continues to get sore in the brace then I'm taking her.

                  I have a small worry that she will under-report (though not lie about) the problems for fear of learning the curve is larger. Given that, I may take her in anyway. The next time she is supposed to be seen is when I bring both her and Savannah to the surgeon around Thanksgiving. I suspect Willow might have to be seen sooner than that, unfortunately. We'll see.

                  sharon
                  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


                  • #10
                    Sharon,

                    You know why you didn't think of what I did---you are too personally involved to think straight! That's why we come to this forum, for advice and suggestions to keep us thinking straight.

                    Having two teenage daughters, I totally understand Willow's thinking! After seeing her sister go through surgery, I'm sure she doesn't want to go through that. Therefore, she wouldn't want to see the orthotist or surgeon. But, if she can wear a brace that fits her properly, maybe she could avoid surgery. Sometimes we parents have to make decisions for our kids whether they like it or not because it is what needs to be done.

                    I agree with you that Willow will probably not tell you about her discomfort/pain. She knows how upset and worried you were with Savannah and she won't want to worry you and also, like I said before she is probably worrying about needing surgery herself. Try to keep a close eye on her so you'll know what's going on. If you have to, talk to Savannah and see if Willow is sharing with her what's going on.

                    Hang in there.

                    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


                    • #11
                      Calmer heads prevail. Mary Lou, you are the calmer head for me!

                      Thanks so much.

                      Willow definitely doesn't want the surgery. She saw Savannah every day in the hospital and then in the early recovery at home.

                      But on the other hand, she heard Savannah saying she was glad to get the surgery by two weeks out. She also heard Savannah saying it was worth it several times. Also, she heard Savannah say, out of the blue a little over two months out, that she finally felt "normal" again. I don't know about Willow but *I* have been on cloud nine ever since hearing her say that. I literally think about it every day since. It hasn't been that long a road for her, she was only diagnosed in September 2007. It's been a whirlwind, though.

                      I asked Willow if she has any trouble in the last few days getting the brace on or if she was sore in the morning lately. She said "no" to both questions but she also said she slept through the night last night like it was somehow novel. Now this shocked me because I was under the impression she was sleeping through the night ever since 2-3 weeks after getting the brace. I have to explore that further with her. It was on the way to school this morning and there was no time. I think she needs to go back to the orthotist.

                      I have been watching both girls and walking behind them at malls and such just to see how their backs look and how they move. I would say the two are EXTREMELY close in terms of rotation and thoracic bend (trunk L-R asymmetry) at the moment. Savannah has a (corrected) 5* and a very slight right shoulder blade prominence. Willow has a low-mid 30*s curve and almost the same amount of right shoulder blade protrusion, maybe a bit less.

                      I keep trying to make mental images of Willow to see if I can tell if her curve is worsening but I doubt I can ever tell because her rotation is so slight.

                      Thanks again for all your help, Mary Lou.

                      sharon
                      Last edited by Pooka1; 06-06-2008, 09:32 AM.
                      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


                      • #12
                        I would see how her skin looks under the brace, if she'll let you check her out. Alexander would get red spots that began to look sort of like pressure sores when his brace wasn't fitting right. Especially on his bony areas like his pelvic bones or on the protrusion of his back muscles (rib hump?), it would get particularly red and painful towards the end when his curve was increasing.
                        Laurie

                        Mother of Alexander & Zachary:
                        Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
                        Zach is 13 years old and very energetic.

                        Comment


                        • #13
                          Okay, Laurie. Thanks.

                          sharon
                          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

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