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  • #31
    Originally posted by Pooka1 View Post
    But some people don't do a lick of meaningful exercise and their curves never progress. In fact that is the current paradigm... under 40* - 50* you are not expected to progress to surgery territory irrepsective of how much exercise you do and don't do.

    Also some curves progress despite multiple licks of meangful exercise.

    So it can't be a lockstep connection between gravity and weakening muscles. Those things are clearly uncoupled in some people (both ways) so there is no generalization to be made. That isn't to say it isn't coupled to some extent in some people.

    (waving hands wildly ... but define "meaningful exercise" :-)
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
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    • #32
      Originally posted by mamamax View Post
      Today's risk of AIS progression attached (source: SRS).

      Sharon - can you (or anyone else) find the data from 1960?

      Just curious, would like to know.

      Maxene, what you're asking for doesn't exist. The main documentation lies in the patients who came in the 60s/70s - and 'most all of us were told if we weren't curving when we stopped growing, we were safe.

      What were you told? And by whom?

      Strangely, I noticed all your early posts are gone from here. It's a good thing I copied stuff out for my own reference: I must have completely missed you were diagnosed at 11 as you very recently stated.

      Going to look now - and wondering why you've never stressed that when pushed by the JIS/AIS group ... ?
      Fusion is NOT the end of the world.
      AIDS Walk Houston 2008 5K @ 33 days post op!


      41, dx'd JIS & Boston braced @ 10
      Pre-op ±53°, Post-op < 20°
      Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


      VIEW MY X-RAYS
      EMAIL ME

      Comment


      • #33
        Originally posted by txmarinemom View Post
        Maxene, what you're asking for doesn't exist. The main documentation lies in the patients who came in the 60s/70s - and 'most all of us were told if we weren't curving when we stopped growing, we were safe.
        There is no data from 1960? Wow, I didn't realize that. So what we have today, was put together rather quickly - in terms of history. Interesting.


        Strangely, I noticed all your early posts are gone from here. It's a good thing I copied stuff out for my own reference: I must have completely missed you were diagnosed at 11 as you very recently stated.

        Going to look now - and wondering why you've never stressed that when pushed by the JIS/AIS group ... ?
        There you go again - attempting to discredit me. I'm not a liar Pam. I have little recall of my diagnosis at 11. This was a very emotionally difficult period in my life and there are other things as well during that period that are also difficult to remember.

        As for missing information .. I see your expressed desire to bring legal suit against Joe O'Brien is gone. Did you settle out of court?

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        • #34
          Originally posted by hdugger
          Those progression numbers don't seem right to me. I'm fairly certain my son with a 50 something curve has much greater than a 30% chance of progressing. I suspect they need to break that 30 - 60 degree range into smaller segments to get the real odds. Also, I know it depends on where the curve is. I'm pretty sure his 50 something degree high thoracic curve has something more like a 70% chance of progressing - and maybe more then that.
          I believe the numbers are based on point of diagnosis (age and degree of curvature when first diagnosed), and may be meant to serve as a general guideline rather than something more finite. I'm betting the numbers will change, perhaps significantly, as time goes on and data collection methods expand and improve.

          Comment


          • #35
            Originally posted by txmarinemom View Post
            (waving hands wildly ... but define "meaningful exercise" :-)
            Pam I actually meant "targeted" like Schroth and Clear and Torso rotation.
            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."

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            • #36
              Originally posted by mamamax View Post
              There is no data from 1960? Wow, I didn't realize that. So what we have today, was put together rather quickly - in terms of history. Interesting.
              There is no reason to think the earlier progression numbers are different from the later ones.

              There is no reason to conclude the data we have now was put together "rather quickly."

              There are enough cases in the US alone to put together a large data set to generate a risk table without going back to the 1960s.
              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


              • #37
                Originally posted by hdugger
                Those progression numbers don't seem right to me. I'm fairly certain my son with a 50 something curve has much greater than a 30% chance of progressing. I suspect they need to break that 30 - 60 degree range into smaller segments to get the real odds. Also, I know it depends on where the curve is. I'm pretty sure his 50 something degree high thoracic curve has something more like a 70% chance of progressing - and maybe more then that.
                As I understand this, the whole table is questionable if it means risk of any progression. That is, virtually all curves will progress. It's just that some are not expected to progress at a rate that will land the person in surgery territory within a normal lifespan.
                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


                • #38
                  Originally posted by Pooka1 View Post
                  There is no reason to think the earlier progression numbers are different from the later ones.
                  Why not? I mean, technology, collection methods, and number of statistics gathered both expand and improve as time goes on. I would think.

                  There is no reason to conclude the data we have now was put together "rather quickly."
                  If (as was previously said), there is no Rate of Progression table from 1960. Then the creation of one over the course of 30 or 40 years - is a major step forward - compared to time out of mind history prior. I think.

                  There are enough cases in the US alone to put together a large data set to generate a risk table without going back to the 1960s.
                  I agree that the data exists, and always has. I question how it has been reported and tabulated. Statistically, there would have been less information available in 1960 than in 2010 ... based on population numbers alone. I'm curious to know if there may have been a shift in accepted guidelines based on better reporting methods.

                  Comment


                  • #39
                    Any table with data garnered in an inaccurate and imprecise fashion is not worth reading. FULL STOP.

                    The technology used to asses progression for any of these tables has always been Cobb angle determination from a radiograph over time as far as I know. Of course inter- and intra-operator reading variability applies and stretches those ranges even further than they are now. If any of that is incorrect then we can all give up and go home.

                    Sometimes, a radiograph is just a radiograph.
                    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


                    • #40
                      I understand what you are saying, and understand the criteria for projection. All I'm saying (or questioning) is - that in 1960 ... IF there was a rate of progression estimate that was used to counsel patients (and parents of patients), were the number of statistics gathered less than the number of statistics we have today. And if so, has that increased information changed the guidelines used to counsel patients and parents today? IF so, then will continued improved methods of gathering data (along with increased numbers of data), effect a future change in guidelines as well? I think it is possible. In the end, it may be a rather moot point given the typical effects of old age. Thanks for your input Sharon, always valued from a research scientist's point of view :-)

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                      • #41
                        I think there is a reason these progression risk tables tend not to show standard deviations, from any time period. The reason is the error bars would overwhelm all the data leaving the table of limited use. This is a very variable condition... risk percentages will be less useful in that case even if a boatload of data goes into it. And when a boatload of data is utilized, the variability would be obvious.

                        My bottom line is I don't put much stock in progression risk tables for scoliosis and I don't think the ones without error bars are even worth reading.
                        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


                        • #42
                          Originally posted by hdugger
                          The table is showing up to 60 degrees with only a 30% change of surgical progression, when 60 degrees is already in surgical territory.
                          No actually I don't think any surgeon would operate absent proof of progression even on a 60* curve. But I don't know that.

                          Recall Pam and at least one other person on here had a curve within surgery territory that was stable for a few decades. This is a microscopic microcosm of a sandbox and "we" (us bunnies) had two cases. That's why I think proof of progression would be required even for a 60* curve.
                          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


                          • #43
                            I think the variability of this condition is such that it will be very hard to ever put together a worthwhile progression risk table.

                            So while some smaller curves that aren't expected to progress will progress, we also have some larger curves that are expected to progress to remain stable.

                            It's just too variable.
                            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


                            • #44
                              Originally posted by Pooka1 View Post
                              I think the variability of this condition is such that it will be very hard to ever put together a worthwhile progression risk table.

                              So while some smaller curves that aren't expected to progress will progress, we also have some larger curves that are expected to progress to remain stable.

                              It's just too variable.
                              True Scoliosis appears to vary greatly, still cause is unknown, how can we say its completely skeletal, when components of anatomy consist of bone, ligaments, muscles, nerves, and brain stem,

                              I would say its more complex as in neuromuscular and skeletal combination.

                              Then if we treat only one part of this ...will it work? ie like bracing, massage.

                              I am glad to see surgery has been good to your daughters, that is an amazing correction. Its good to know that it works.

                              Surgery is more complex and I would imagine last resort..due to all complications..the doctors always scare the parents with the lists of what the negatives outcomes...paralysis, nerve damage, and imagine anesthesia complications...

                              So don't mind us while we hope and pray for something out there that can help improve scoliosis w/o surgery. Glad its an option but not ready for that step.
                              age 15
                              Daughter diagnosed at age 13
                              T20 l23 10-09
                              T27 L27 1/2010

                              T10 L 20 in brace 4/2010
                              T22 L25 12/2010 out of brace
                              T24 L25 7/2011 out of brace

                              Type 1 diabetes- pumping
                              Wearing a Boston brace and Schroth therapy
                              Faith, Hope, and Love- the greatest of these is Love

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                              • #45
                                Originally posted by Bigbluefrog View Post
                                True Scoliosis appears to vary greatly, still cause is unknown, how can we say its completely skeletal, when components of anatomy consist of bone, ligaments, muscles, nerves, and brain stem,
                                To my knowledge the experts do NOT say it is completely skeletal. There are many avenues of active research, many of which are non-skeletal.

                                I would say its more complex as in neuromuscular and skeletal combination.
                                You're in good company saying that. Did you see the 2009 POSNA talk about the top hypotheses being investigated? They are all over the biochemical map.

                                Surgery is more complex and I would imagine last resort..due to all complications..the doctors always scare the parents with the lists of what the negatives outcomes...paralysis, nerve damage, and imagine anesthesia complications...
                                Yes it is a last resort. Some people have no choice. Kids are either pre-surgial or surgical. If the curve is moving fast enough, there is no choice. The kids who are sub-surgical don't have a choice either... no competent surgeon will operate (other than to perhaps save levels) if a kid is sub-surgical. Some imagine they have a choice like the parents of kids with large curves who decline surgery. And maybe they can live a normal, pain-free life. But what are the odds?

                                So don't mind us while we hope and pray for something out there that can help improve scoliosis w/o surgery. Glad its an option but not ready for that step.
                                Your daughter's curves are too small for surgery so I am not following where the problem is other than conservative methods have yet to pony up proof of efficacy. Even if you were ready for surgery, I seriously doubt you would find a surgeon to operate on a ~25* T/25* L double major (or whatever your daughter has).

                                It is not crazy to hope at least one conservative treatment will pan out.
                                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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