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plea for help concerning information on screening

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  • #16
    It seems that screening for scoliosis in the U.S. varies from state to state, with some states having more stringent guidelines than others. Here in NJ the school screening starts in 5th grade at age 10 (elementary school) and I believe continues every other year, but I'm not sure up to what age. (It used to be an annual screenning, but budget constraints made it every other year.) My daughter's scoliosis wasn't detected at school because she was 10 in 4th grade. But, thankfully when I took her for her annual checkup at age 11 her pediatrician detected was 17 degrees at that point. Within a few days she had had an x-ray and within 2 months she started seeing a pediatric orthopedic who specializes in scoliosis. A year later (every 4 - 6 months she had another x-ray/check-up) the curves had jumped to 24/23 and she began wearing a TLSO brace...that was over 2 years ago.

    The initial screening required her to stand with her feet together and bend at the waist, letting her arms hang down. In her case, you could see one side of her back was a bit higher. The doctor had some kind of instrument that she placed on her back to measure, but it is different from the way the ortho measures the curve.

    Just a note about the brace: it has proved to be effective in holding the curves but this past summer there was an increase as she had a growth spurt and basically outgrew her brace! She had a new one made. Right now she's getting ALOT of time in her back brace as she broke her right leg a month ago and has had a full length cast (and now leg brace). Hope this helps!


    • #17
      I notice there are several of us who express concern about scoliosis going undetected. I have the same type situation: I noticed the rib hump when my daughter was lying down for a back rub for pain. The doctor had recorded 6 months earlier "no scoliosis." Her curve was 45 degrees when it was first "diagnosed", right after I saw the rib hump. I am assuming the curve may have been missed previously. I wonder if anyone is doing a study on this issue to prevent it from occuring in the future? As many of you are saying, either the schools that check for it are not reporting it to the parents, or even the medical community is not responding appropriately. This should be able to be changed somehow by some concerned parents. Kris


      • #18
        kris it's entirely possible that in your case, your daughter's scoliosis was undetectable (aside from using xrays) when the doctor examined her months before you spotted it. it's because of the rapid growth in adolescence and therefore the ability for change to occur quickly, that kids should be checked regularly (ideally every 1-2 months)

        here in the UK there's such a huge fear of litigation culture that schools won't check for anything anymore. the health service refuse to put a screening system in place because they believe there are too many xrays and follow ups for not enough serious cases, and schools can't get kids to do the bend over test because they don't have the knowledge or the "legal right" (there's such a massive paranoia surrounding paedophilia it's untrue) i get to the point of frustration where i just feel like standing in the middle of the country and screaming "fine! let your kids suffer from decreased lung function and chronic pain when they're older!" to get something done and put in place is so hard, but i've decided i have to try
        diagnosed aged 14 (2001)
        braced from july 2001 to february 2003 to hold curves
        fused T11-L3 on july 16th 2005 (aged 18)
        Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
        scoliosis support forum


        • #19
          i live in the u.s.
          my scoliosis was 'discovered' during a physical when i was about nine, and my school checked in 7th grade, when i was 11. i was excused from the testing (no need for it) but i think they have you bend over and can tell somehow. they do notify your parents because my friend was tested and they thought she had it, so they called her parents. if my scoliosis wasn't discovered during my physical i probably would have died from scoliosis complications by the time the school exam occured, so it's not really effective at all.
          16, Senior
          Spina Bifida
          Boston Brace for 2 years
          Spinal Fusion July 25, 2002
          Post-Op Brace for 6 months


          • #20
            I live in California and my son was diagnosed at his 10 yr annual check up with his pediatrician. He told my son to bend over forward and he looked at his back. He ran his hand over it and noticed the hump on one side. We were referred to a spine specialist. At school they also check every year during physical education, one teacher actually used him as an example of what they are looking for. I'm not sure he was too thrilled.
            Mom of Jeremy with Scolosis 16 yrs old
            Fused T-1 to T-11 Nov 14, 2005
            Kaiser Oakland, Dr. Ravi Bains


            • #21
              Our scoli screenings were done in 7th grade by our PE teachers. Mine was out on maternity leave so the substitute did the exam, but didnt know what she was looking for. I dont know if I had it back then, but they never told me I did.
              I played sports in High school and when I would go to my GP for a sports physical he never mentioned anything about it. It was the summer before my sophomore year when I had another sports physical (about 4 months after the one with my GP) and our team doctor picked up on my curve about half way into my bend. About 2 days later I had x rays and saw my GP who said I did have scoli but it probably wasnt bad enough to do anything with. He bit his tongue when he looked at the x rays and saw that my curve was already 35*.
              I was sent to an ortho specialist for scoli and he thought that I was done growing (at age 14). He never braced me and just put me in the "watch and wait" stage checking me every 6 months to 1 year. During this time my pain got worse and I became more and more uneven. He told me it was all in my head.
              I finally got a second opinion and my curves had progressed 10* in about 5 months. I had the surgery to correct my curves and they went from 45* to about 14*T and 20*L.
              I wish someone would have told me while I was younger that I might have had it. Maybe then I could have been braced and not had the surgery. I dont regret the surgery, but It should have been a last resort, after bracing...but my stupid ortho didnt think so.


              • #22
                Amanda - you shouldn't think of 'what might have been' if you wore a back brace. I wore one and it did nothing to stop my progressive curve. I'm not 100% sure about this, but I don't think bracing works most of the time at least from what I've read.
                14 yrs old: diagnosed by gym teacher during a scoliosis screening
                14 - 15 yrs old: wore a brace and went to a chiropractor. Both did nothing.
                16 - 21 yrs old: what's scoliosis?
                21 - 27 yrs old: the progression of back pain
                28 yrs old: first x-ray since I was 14 and curve has more than doubled.

                Considering surgery based on pain, curve progression, and the dream of having 'normal' hips.


                • #23
                  i think that's a bit of a harsh assessment, gypsy. i think it's more that there are a lot of factors involved in the success of bracing, and two of those are early diagnosis and skilled orthotics, as well as many more. it sounds like in your case (as in mine) you were diagnosed quite late into your growth, making your chances of effectiveness of bracing slimmer. but i agree that it's a little futile to think of what could have been however, this shouldn't stop us trying to change what happens regarding others in the future and their chances of early detection and treatment
                  diagnosed aged 14 (2001)
                  braced from july 2001 to february 2003 to hold curves
                  fused T11-L3 on july 16th 2005 (aged 18)
                  Discharged by surgeon july 11th 2007 (aged 20 and almost 2 years post-op)
                  scoliosis support forum


                  • #24
                    Well, in Texas they do school screenings in middle school. I have to say it's quite embarrasing. They took us (all girls together, then all boys) into the school library and made us take off our shirts. Then they stood us in front of a nurse and asked us to bend over. They just ran their hand down our back, said OK or not OK and sent us back to our class. This is how I found out I had scoliosis. Of course, that was 17 years ago, so I don't know if they do it the same or not.


                    • #25
                      Originally posted by rmcginnnis
                      Well, in Texas they do school screenings in middle school. I have to say it's quite embarrasing. They took us (all girls together, then all boys) into the school library and made us take off our shirts. Then they stood us in front of a nurse and asked us to bend over. They just ran their hand down our back, said OK or not OK and sent us back to our class. This is how I found out I had scoliosis. Of course, that was 17 years ago, so I don't know if they do it the same or not.
                      My school district took each student behind a closed curtained area... parents would have a field day if the school did what they did when you were screened.
                      30 something y.o.

                      2003 - T45, L???
                      2005 - T50, L31
                      bunch of measurements between...

                      2011 - T60, L32
                      2013 - T68, L?

                      Posterior Fusion Sept 2014 -- T3 - L3
                      Post - op curve ~35


                      • #26
                        School Screening

                        I teach at a middle school in Maryland. For 12 years, I have heard about how our school nurse and someone from the outside (public health nurse I guess) comes in to screen the 7th grades students for scoliosis through physical education classes. Therefore, I always thought my own children would be checked in 7th grade maybe even earlier in 5th grade.

                        This summer at my 12 years old (entering 7th grade) daughter's physical exam for camp, her doctor said she would check her for scoliosis. I thought whatever, great, she'll be checked now and in PE class. That's when we found out she has scoliosis.

                        I went to speak with our school nurse and head of the PE department regarding when our school screening will take place. The nurse explained that our school board has discontinued school screening due to the cost. Unbelieveable!! If they would have had screening in elementary school perhaps my DD's scoliosis would have been picked up sooner. The PE department head teacher is also outraged, as her own daughter was treated for scoliosis through middle and high school.

                        Anyway, obviously not all schools in the US or at least Maryland are screening. I wish I would have known this earlier. I am now telling friends and family to have their children checked at each visit to the pediatrician. We check kids for hearing and vision in elementary school. Why not this?
                        Daughter 17.5 (diagnosed @ 12 yrs) in Sept 2007 AIS
                        Oct 2007: T-20, L-20 [160 cm]
                        Mar 2008: T-24, L-24 [163 cm], started Cheneau brace
                        May 2008: T-16, L-7 (in-brace) [164.2 cm]
                        Oct 2008: T-23, L-15 (out-of-brace) [167 cm]
                        Feb 2009: T-20, L-18 (in-brace) 2nd brace
                        Jun 2009: T-20, L-16 (in-brace) [172.2 cm]
                        Dec 2009: T-33, L-16 (out-of-brace) [173.8 cm]
                        Apr 2010: T-25, L-12 (in-brace) [175.3 cm] 3rd brace
                        Mar 2011: T31, L20 (out) [176.2]
                        Jul 2012: T31, L20 (out) [177.2]


                        • #27
                          Where I live, my children have been checked by their doctor every year at their physical. This is how we found out about our daughter's scoliosis. It is just routine where we live.
                          From Bucks County, Pa., USA

                          Mom to Matthew,19, Jessica, 17, and Nicole, 14
                          Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3


                          • #28
                            Where I am in the US screening is mandatory in the 6th grade. Thats how we found out about my daughter a while ago. Well sort of! She came home from school just horrified, crying and crying saying that they told her she had severe scoliosis! I was LIVID!!!! To say the least. I told her not to worry about it, they were not Dr's and that we would see her pediatrician and go from there. Well the next week we saw him and had x-rays done. And now a month later we are scheduled for surgery! To this day the school still has not notified me of anything! I spoke with the school nurse who assures me that my child would have never been told that! And that a letter will come in the mail regarding this! Well I am still waiting for this letter!!!!


                            • #29
                              Wow. reading this thread has made me realize how lucky I was to be an observant kid. I had the screening in my 6th grade gym class. They did it in the locker rooms at my school. I remember my gym teacher looked at my back first, and then called the nurse over to look at me after. They never told me specifically that they thought I had scoliosis, but I figured something was up since no one else got looked at twice.

                              I told my mom about it, and she decided to ask my pediatrician about it at my next yearly physical, which was already scheduled for a month or 2 later. My doctor noticed a minor difference in my ribs, and referred me to an orthopedic surgeon who found a 15* curve. I began seeing the surgeon every 6 months for x-rays and measurements. after 4 years of regular monitoring, my curve had progressed to a 60* c curve and I was scheduled for surgery.

                              I really have no idea if the school would have notified my parents, or if my doctor would have caught it if I hadn't told my mom about the screening. I'm sure I would have gone undiagnosed for a couple more years. I never wore a brace though, so I doubt it would have made a difference if it had been caught later.

                              My class was screened again in 8th grade, and I remember being used as an example of what they were looking for like someone else mentioned. I had already been to several checkups at that point, and had medical students and other doctors looking at my back in addition to my surgeon, so it really didn't phase me much.
                              Fused T2-L3 in March, 2000
                              Hardware removed April 2003
                              Living a full, active life almost 9 years later.
                              Decided against thoracoplasty and revision to correct crankshafting and cervical kyphosis because right now a few more curves don't bother me enough to warrant more surgery.