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  • #16
    1,000 apologies

    CD,

    I am sorry about the hijacking of your wonderful news thread.

    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


    • #17
      congratulations

      Concerned Dad

      Congratulations on the great news about your daughter!

      It sounds you can almost call this one done. If she didn't progress from 14 to 15 years old it seems even LESS likely that she'll progress from 15 to 16.

      Who knows what advanced technologies will come along during her lifetime to correct her remaining curve.

      Comment


      • #18
        I second Dingo's remarks!

        CD, I really do believe that it is not that many people who continue to progress in adulthood that are less than fifty degrees at maturity. I have posted a couple of studies in the past that attest to that fact. And it does sound like most of these surgeons continue to state that. Please keep in mind that this forum is a seriously unrepresentative sample of scoliosis patients.

        I just wanted to make a comment about the study that keeps getting quoted, i.e:

        "As 70% of the observed patients during the original study period did not require any other treatment, 70% of the initially braced patients can therefore be regarded as having been treated unnecessarily."
        I really don't think it should be considered that these patients have been treated unncessarily. It is not "unnecessary" just because someone didn't reach the surgical range. I think it is a great benefit that lots of these patients kept their Cobb angles from increasing in size. It probably helps in the longterm also, as the larger curves tend to increase more in adulthood than the smaller ones.

        I am noticing people now stating that 70% of people are treated unnecessarily on this forum due to this, and I think that needs to be reevaluated. You know, repeat something enough and it becomes fact.

        Comment


        • #19
          Well, that 70% number comes from a pretty reputable study.

          But I understand your point about surgery being the criteria to measure effectivness.

          There are certainly two (or more) valid views on the topic.
          Dr Dolan in her 2007 Metanalysis Paper expresses her views as follows:

          Patients and families don’t generally fear curve progression; they fear curve progression to the point where surgery is the only option to improve or maintain an acceptable level of cosmesis. Therefore, it is not surprising that many opt for orthotic treatment without seriously considering the approach of watchful waiting advocated by Dickson and Weinstein in England56 and Goldberg et al57 in Ireland. Unfortunately, orthotic treatment is not necessarily benign in terms of the psychosocial and body image concerns it causes for many families. Therefore, we think that such a treatment decision should be based on the best evidence available concerning the rate of surgery with and without treatment, including the patient and treatment characteristics that contribute to higher rates of surgery. This evidence is an integral part of informed choice and should be available to clinicians, patients, and their parents as they contemplate bracing. To date, no systematic review has synthesized.

          Sounds reasonable to me. The problem I have with her analysis is that she did not include the european studies where they used both bracing and physical therapy. That seems odd.

          Comment


          • #20
            Originally posted by Ballet Mom View Post

            CD, I really do believe that it is not that many people who continue to progress in adulthood that are less than fifty degrees at maturity.
            <snip>
            I think it is a great benefit that lots of these patients kept their Cobb angles from increasing in size.
            This seems contradictory.

            If you brace and stop a curve at 30 degrees that may otherwise go to 35 degrees? What is the "great benefit"?

            A great benefit would be to stop a curve at 30 degrees that may otherwise progress to surgery (and Dolans paper says that there is a lack of evidence for this). Daniellsons paper (which came after Dolans paper) says there are only a few (10%) who benefit (using the surgery criteria).

            I'm not saying it isnt beneficial to (in my example) stop a curve at 30 that might go to 35. But, the cost of that (possible) benefit is wearing a brace. I dont see that 5 degree improvement as a "great" benefit (relative to the treatment). Preventing a surgery.... that would, in my opinion, be a great and worthwhile benefit.

            What we need is a way to determine WHO would benefit most. If there were a way to determine beforehand who that 10% was, well, that would be a big step forward. If 100% of the braced kids benefited, that would be great. Either through better/more effective braces, or through better screening criteria (DNA? or the results from the Braist study) to determine who is most suitable for bracing (I "guessed" my daughter wasnt suitable for bracing based on her skeletal maturity).

            Help me see this because it seems central to the whole discussion about bracing.

            Comment


            • #21
              Originally posted by concerned dad View Post
              The problem I have with her analysis is that she did not include the european studies where they used both bracing and physical therapy. That seems odd.
              What was the reason given for excluding brace+PT studies?
              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


              • #22
                Originally posted by concerned dad View Post
                What we need is a way to determine WHO would benefit most. If there were a way to determine beforehand who that 10% was, well, that would be a big step forward. If 100% of the braced kids benefited, that would be great. Either through better/more effective braces, or through better screening criteria (DNA? or the results from the Braist study) to determine who is most suitable for bracing (I "guessed" my daughter wasnt suitable for bracing based on her skeletal maturity).
                CD, I think there are folks out there, many in fact, who will STILL brace even if you SHOW only a 10% efficacy rate.

                And I strongly agree about screening. We need to determine who will NOT benefit from bracing. If it's most of the kids in the connective tissue disorder group then I question bracing these kids at all. And I definitely question waiting until 50* (as opposed to 40* or even lower) for fusion with this group if it can be shown that doing so always results in a longer fusion (as I strongly suspect).
                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


                • #23
                  Hi CD,

                  Funny you should quote Dolan. I already disagree with her from the Braist study...heh. This is the woman that wants to move money from scoliosis treatment to treatment of obesity in children....right? From a real problem like scoliosis, to a problem of learning to eat correctly, eliminating soda and french fries from kids meals, and getting out and playing.

                  Anyhow, to answer your question, scoliosis is a progressive deformity. The deformity progresses with growth. The difference in the look of my daughter's back at different Cobb angles was shocking. I suspect any scoliosis sufferer and their parents would be thrilled to knock off six degrees or more off of their deformity (I believe six degrees was average according to that study, some are much greater -assuming that this study is repeatable.) And I believe my daughter's deformity wasn't nearly as pronounced as other kids are. I suspect every five degrees increase in curve creates a very noticeable change in the deformity of these kids.

                  These scoli kids get only one chance to prevent this deformity from increasing, which is during their growth...other than surgery. I can't imagine anyone in the healing profession not giving them the chance to minimize it. If people think bracing is not benign, do they think that major spinal surgery is benign? Do they think living with a greater deformity is easier psychologically that never made it to the surgical level, than living with a smaller, less noticable deformity? I don't see anything benign about scoliosis at all. It seems to be a matter of making the least worst decision possible...I think someone on this forum some time ago mentioned needing the wisdom of Solomon. Isn't that the truth.

                  I agree that tests that could predict if someone was going to progress would be a major breakthrough. Unfortunately, I worry that this will let lots of kids slide through the cracks that wouldn't have before. For example, if the genetic test is actually testing for something like hyperextended joints, rather than progression of the scoliosis. Hopefully, that blood test that Saint-Justine's hospital has come up with can accurately predict those who will progress...all of them, not just most of them.

                  Anyhow, that's my feeling, I feel terribly sorry for the kids in Ireland that aren't given any bracing...and look at the mess they have now with the number of kids needing surgery and lots of them not getting it. Perhaps their studies are wrong and need to be re-evaluated. Who knows. And I feel terribly sorry for the kids that aren't prescribed a brace by their orthopedic surgeons here in the USA at 25 degrees (even though I believe parents should be given the option to brace at a progressing twenty degree curve).

                  Comment


                  • #24
                    Pooka,


                    If it's most of the kids in the connective tissue disorder group then I question bracing these kids at all.
                    Unfortunately, your daughter would have been braced anyway (with a different doctor), as she has run the gamut of tests for Marfan's if I remember correctly, and your daughter's doctors still do not believe she has it. We can all certainly wish there were better ways to diagnose possible borderline cases, but the testing is not there at this point. The best that could be done in such a case is give you the option to brace or not.
                    Last edited by Ballet Mom; 08-31-2009, 03:56 PM. Reason: typo

                    Comment


                    • #25
                      Here are a couple of interesting letters to the editor of the American Family Physician from January 1, 2003. Note that the first one has the team so well-known by all of us from the Braist trial. The second one is a letter that receives kudos from this aforementioned team and is submitted by K. Allen Greiner, a doctor in family medicine and also has a degree in Public Health - like Lori Dolan. They are the second and third letters listed.

                      http://www.aafp.org/afp/20030101/letters.html

                      Here's a telling quote from him:

                      These facts must be faced as new cohort data are made available and show that most of the interventions performed on patients with idiopathic scoliosis are making a cosmetic difference rather than a physiologic difference.
                      So basically, these health professionals really don't care that the braces are making a cosmetic difference in the braced patients.

                      Notice that both this doctor and Lori Dolan have graduated with degrees in Public Health which is the equivalent to a Masters in Business (MBA) degree for the health field. So basically we have two trained bean counters who would rather not have the medical field pay for cosmetic bracing for scoliosis patients...even though ten percent more would require surgery according to CD's posted study. Just as I thought... it's the bean counters at work.

                      Comment


                      • #26
                        Originally posted by hdugger
                        As the parent of a son with scoliosis, I absolutely understand the heat about randomized trials. As a researcher, I also absolutely understand their importance. I don't have much light to shine either way on that subject. But I did want to de-vilify the lowly MPH
                        Oh bean counters always say that!

                        Wow. I'm so glad to know we have a MPH here who has expertise in experimental design. I wish you were around a while ago when us little lay bunnies were trying to sort out some of the bracing literature.

                        Please stick around. Pretty please.
                        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


                        • #27
                          Sorry hdugger, I didn't mean to tar all the Public Health graduates out there. I've always heard that the MPH was the equivalent of the MBA and MBAs are known for being ruthless beancounter costcutters...heh.

                          However, here's another letter to the scientific journal Pediatrics from June 2008. These letter writers are from the department of public health in Rotterdam! Here's a clip from their letter:

                          Richards et al mention that most studies have concluded that brace treatment is effective. However, they did not mention a number of studies that have raised doubt on its effectiveness. Dolan and Weinstein recently published a systematic review of clinical data concerning surgical rates. The pooled surgical rate was 23% after bracing and 22% after observation. They concluded that this provided no evidence to recommend bracing over observation, which means that one of the most important conditions (ie, effective early treatment) before a screening program can be justified has not been met.
                          http://pediatrics.aappublications.or...ull/121/6/1297

                          I have to conclude that Dolan and Weinstein are acting as beancounters. Really, how dare they decide that it is okay for all these kids to live with an increased deformity just because a mere 10 percent more kids will progress to surgery, according to that Swedish study? This is just not the same as a nose job or a boob job that insurance companies rightly deny paying for. It is a justified medical treatment that ranks right up there with all the other pediatric conditions that are treated.

                          It also sounds to me that part of the reason for this study is to save on screening costs, let alone bracing costs, and yet, this study only looks at the Boston brace. So, if anybody uses the outcome of this study, which is apparently based on surgical rates only and not cosmetic results, to eliminate screening in schools to save money, they are causing children to not be screened for any of the other braces out there too. I am really furious about this. I'm so angry, I'm about ready to look into legal remedies should these people be successful in their campaign to not treat and not screen these kids for scoliosis. They can talk about equipoise all they want, what they're doing is unethical....and they are definitely acting as beancounters.

                          Comment


                          • #28
                            Surgery as an endpoint

                            I have made this point before...

                            There are folks just in this minuscule sand box who have surgery on single curves <50* and those who have double majors curves in the 60's* who do not have surgery.

                            It can't be defended as a robust endpoint.

                            Hitting or exceeding 50* seems far more robust.
                            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


                            • #29
                              See? This is why I at least need the input of an epidemiologist.

                              In my nascent, embryonic, inchoate, sophomoric forays into the medical literature, I have concluded it is far harder to do a good study in this field than it is in other scientific fields.

                              Also, you can't get an uncontrolled study published in my field whereas you can find uncontrolled studies still being published in medicine.

                              Controls... not just a good idea.
                              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


                              • #30
                                Originally posted by hdugger
                                Hi BalletMom,

                                Have you seen the whole study from Dolan and Weinstein? In their abstract (http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum) they mention a review of other endpoints "Critical analysis of the studies evaluating bracing in AIS yields limited evidence concerning the effect of TLSOs on curve progression, rate of surgery, and the burden of suffering associated with AIS." That suggests that they looked at the other endpoints but didn't see much information in the available articles. I'd like to see what that review of the literature turned up, and why they ended up focusing on surgery alone.
                                Hi hdugger,

                                I have downloaded an article called "Professional Opinion Concerning the Effectiveness of Bracing Relative to Observation in Adolescent Idiopathic Scoliosis" by Dolan and Weinstein et al. Here's a pertinent quote:

                                It has been suggested that progression to surgery
                                indicates the ultimate failure of bracing treatment.1 The key
                                question of any future study of bracing, randomized or not,
                                must be "How many patients avoided surgery because of
                                bracing treatment?"
                                The download can be found here:

                                http://braiststudy.com/files/folders/public/entry6.aspx

                                How did they decide to just ignore the increased deformity in these kids? I read about the hospital in Dublin Ireland also that decided not to brace kids in 1991, and they said basically the same thing...that surgery must be the standard to decide whether bracing is effective. I must humbly disagree. I can think of all sorts of ways to save the medical field money if we just decide to stop treating them because they're cosmetic...cleft lip, any deformity that won't kill a kid... oh what a great return to the dark ages this could be. How lovely. But terribly cost effective and efficient.

                                Comment

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