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Another study finds assocation between HYPOkyphosis and Scoliosis

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  • #61
    Originally posted by rohrer01 View Post
    Wow, I'm reall sad to hear how complicated her neurological problem is. I know they can put brain shunts in babies to keep their hydrocephalis from causing brain damage. I'm wondering of something more like that could be done just until she's done growing enough, just to avoid all those surgeries. I don't know what to say except it sounds like you are all over this thing from every aspect. Good for you and good for her.

    About Tamzin, she sounds like a wildcat! I mean that in a good way. I have a neice who rides horses and when she gets on a horse there's no stopping her. They actually did a half hour news segment on her here in the states! Good for her attitude. Her attitude will prevail. I never thought you were pushing her, I was just concerned that she may get tired at some point and that would be okay, especially if she has to have surgery. I'm convinced, from what you say, that she would pick herself right back up and get back at it. Let's hope so, for her sake. Exercise produce endorphins that stimulate the opiod receptors in the brain, which I'm sure you know. I just don't want to see her fall victim of depression if things don't go exactly as planned. Best wishes to you and your whole family. I'll definitely be following along!
    Actually rohrer, my heart surgeon friend in Prague considered the shunt system and is talking to colleagues about it now--for his own knowledge and to be able to afford me quality info (we don't know she has fluid on the brain yet, it's just a possible at the moment--she does not have common symptoms of this further complication). Just reading some alternative stuff right now:
    http://scoliosis3dc.com/wp-content/u..._exercies1.pdf

    Difficult to define Tamzin in any other terms than I've already done. She's not Tomboyish, more stylish; the wildcat only comes out when she's competing and even then, she does it quietly. More like my wife than me. Your niece sounds amazing, wild and free. That is Tamzin too. We live in the Black Mountains, on them, Brecon Beacons national park. Tamzin has done many solitary timed fast walks up the mountain IN THE DARK. Yeah, ok, "wildcat" works well!!!
    As for depression, haven't seen a moment of it since the diagnosis--she's cried once because she can't run cross country this season and missed the track season in the summer. It's that spirit that would be crushed if we have to opt for surgery--this would only happen (I'm thinking) if her curves went ballistic again (can't see me allowing that), caused cardio-pulmonary problems, or the Chiari and SM caused worsening neurological problems. I 100% admire and agree with the decisions of every parent who has a child that has undergone surgery. That was the right decision. For us, in the last five months, I haven't read a single paper or a convincing argument or solid scientific basis for US to proceed to surgery (other than the above developments if they happen).
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

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    • #62
      Dingo

      Sorry, I didn't mean to take your thread off topic. I was actually looking at some older radiographs from over a decade ago when my curves were quite a bit smaller. I didn't even know what hypokyphosis was at that time. It appears that my neck was completely straight with my spine, no neck lordosis, no thoracic kyphosis, just straight. Now my radiographs from two years ago, I still have no neck lordosis and no thoracic kyphosis, but somewhere about C7-T1 there is a kink that juts my head forward creating a more even appearing load that imitates what the spine should look like. I haven't compared if the hypokyphosis has increased or not. I just thought it weird that the neck kink appeared. Maybe that's why I have so much neck pain? I have no way of posting the old radiographs as they are on film and I have yet to get copies of my most recent ones that I had this year. When I get them, I will post last year and this year for comparison. Supposedly my curve improved by four degrees from two years ago, but I think that is just a margin of error. Two scoli docs measured me at 46* top and the one doc didn't measure the bottom and the other measured it at 38*. The scoli doc that I went to who measured the top and not the bottom, his people (radiologist? PA?) measured me at 40*(I think) and 28*, which is quite off from what the doctors measured. My most recent ones measured by a doctor (radiologist?) measured at 42* and 37*. So I am really curious to compare these two films (from two years ago and this year). I haven't even seen this years, just been told what they were. I hope I'm making sense here... I would like to see what my neck and T-spine look like from the side as well. We all know, or at least from what I've seen here, that the radiologists measure these curves much more conservatively than spine surgeons.
      Last edited by rohrer01; 11-21-2011, 04:52 PM.
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

      Comment


      • #63
        Originally posted by rohrer01 View Post
        Two scoli docs measured me at 46* top and the one doc didn't measure the bottom and the other measured it at 38*. The scoli doc that I went to who measured the top and not the bottom, his people (radiologist? PA?) measured me at 40*(I think) and 28*, which is quite off from what the doctors measured. My most recent ones measured by a doctor (radiologist?) measured at 42* and 37*.
        It sounds like your surgeon doesn't bother telling you the angle of the compensatory curve. Our surgeon at no point ever told me the angle of the compensatory lumbar curves for either kid. After both were done with treatment and I got all the radiographs on a CD, I see the radiologist routinely measured them. I think the point is that the radiologist didn't know what was compensatory and what was structural so s/he measured everything.

        As far as I know, compensatory curves are not relevant and tend to go away, almost completely in some cases, when the structural curve is straightened. I assume that is why our surgeon never told me anything about their angle.
        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


        • #64
          For what it's worth on Scott's first visit 3 years ago I asked about his compensatory curve. His doctor told me that it wasn't important. That was the only time it was brought up.

          Comment


          • #65
            Originally posted by Dingo View Post
            For what it's worth on Scott's first visit 3 years ago I asked about his compensatory curve. His doctor told me that it wasn't important. That was the only time it was brought up.
            When I first saw folks reporting two curves when one was so much larger than the other, It confused me because I thought double majors generally had two curves of similar size. At some point, I realized folks were being told the angle of the compensatory curve also. I suspect that some parents here were thinking their kid had two curves that needed to be addressed and not one. I think that is why our surgeon never at any point mentioned the compensatory curve. Folks have enough to worry about without thinking they have to worry about the compensatory curve, at least in adolescence.
            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


            • #66
              Dr. Krajbich only spoke about Elias' main curve, which was at 110*. At first he thought he'd have to fuse him from T2 to L2 but I guess once the release and traction stretched him out, he decided that T4 to L2 was the route to take. When I look at his before x rays, I have a hard time telling just where to begin and end with what needs to be corrected. Thankfully, that is why I am not the expert.
              Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
              Halo Traction & 1st. surgery on March 22nd. 2011
              Spinal Fusion on April 19th. 2011

              Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



              http://tinyurl.com/Elias-Before
              http://tinyurl.com/Elias-After

              Comment


              • #67
                My curve used to be a single major. Now since the compensatory curve is approaching the level of the primary curve I am told I now have a double major curve. In only about two years time, my original curve progressed about 6*, while the "compensatory" curve progressed at least 10* if not more. At this rate my compensatory curve will be larger than my primary curve in a matter of a couple of years. Yikes!

                What's weird is I can "feel" it moving. I've been feeling it move for about 13 years. It's moving slowly, but it's a weird sensation to suddenly have your shoulder drop that had been elevated for many years. It dropped because of the compensatory curve progression that no one was paying any attention to.

                Here's another weird thing. The last time I went to the doctor, they said I grew an inch! I'm almost 43, and I'd better not be growing. I'm going to insist on being measured on a different scale. It had to have been off. But it was just down the hall and around the corner from the other one that measured me where I normally am. I HOPE it was an off scale.
                Last edited by rohrer01; 11-21-2011, 11:12 PM. Reason: extra thoughts
                Be happy!
                We don't know what tomorrow brings,
                but we are alive today!

                Comment


                • #68
                  Originally posted by rohrer01 View Post
                  My curve used to be a single major. Now since the compensatory curve is approaching the level of the primary curve I am told I now have a double major curve. In only about two years time, my original curve progressed about 6*, while the "compensatory" curve progressed at least 10* if not more. At this rate my compensatory curve will be larger than my primary curve in a matter of a couple of years. Yikes!
                  That's something I don't think pediatric orthopedic surgeons are mentioning much I suspect. There are two things I have noticed that make watching these compensatory curves through adulthood as important as watching them prior to maturity...

                  1. Dr. Hey's blog about the several collapsing spine cases even in early adulthood, some in the (formerly) compensatory curve regions.

                  2. The apparent over-representation of double majors (or better) in the adult testimonials over the prediction that most adults being fused should be for single thoracic curves. Single thoracic curves should dominate adult fusions because those curves are both more numerous in adolescence and are more likely to progress through life. But that is not what we see on this forum... we see mostly longer fusions beyond the thorax.

                  If I had a kid with an untreated T curve going into adulthood, I would be telling them to watch the compensatory as much as the structural curve. The first sign that it is going would be an alarm bell to fuse the T curve at whatever angle it is in my opinion just to save the lumbar. Any surgeon who refuses would have to explain the Hey cases to a person's face. They would have to explain how they likely could have saved the lumbar but didn't. Good luck to them.
                  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


                  • #69
                    Originally posted by Pooka1 View Post
                    That's something I don't think pediatric orthopedic surgeons are mentioning much I suspect. There are two things I have noticed that make watching these compensatory curves through adulthood as important as watching them prior to maturity...

                    1. Dr. Hey's blog about the several collapsing spine cases even in early adulthood, some in the (formerly) compensatory curve regions.

                    2. The apparent over-representation of double majors (or better) in the adult testimonials over the prediction that most adults being fused should be for single thoracic curves. Single thoracic curves should dominate adult fusions because those curves are both more numerous in adolescence and are more likely to progress through life. But that is not what we see on this forum... we see mostly longer fusions beyond the thorax.

                    If I had a kid with an untreated T curve going into adulthood, I would be telling them to watch the compensatory as much as the structural curve. The first sign that it is going would be an alarm bell to fuse the T curve at whatever angle it is in my opinion just to save the lumbar. Any surgeon who refuses would have to explain the Hey cases to a person's face. They would have to explain how they likely could have saved the lumbar but didn't. Good luck to them.
                    Yeah, tell that to my surgeon. He's telling me T1 (or maybe T2 for fear of going that high because of my BMI) all the way to L2, when he finally gets around to doing it. He wants something to be 60* before he will help, but we've heard this story before. My insurance won't pay for anyone else.
                    Be happy!
                    We don't know what tomorrow brings,
                    but we are alive today!

                    Comment


                    • #70
                      First off, I'm extremely impressed at the atmosphere in this thread. This is an example of this forum at its best.

                      Originally posted by rohrer01 View Post
                      I always hated it when they forced me to stand in an unnatural way during x-rays. I refuse to do it now. But, I am much older and wiser. ;-)
                      Originally posted by Pooka1 View Post
                      There was no manipulation of shoulders, hips, whatever. I can't even imagine what they would ask a patient to do OTHER than to stand in front of the beam.
                      The only 'manipulation' I would want to see is to ensure the same posture is done in all x-rays. Or the same positioning, e.g. arms by the side, feet placed/positioned here, posterior most portion of the back touching the back plate, etc... I'm not sure exactly what the best positioning would be to allow for growth or spine changes. But forcing a position definitely wouldn't be good. But "just stand there" is a little too loose.

                      Originally posted by TAMZTOM View Post
                      Agree completely.
                      Agree as well.

                      Originally posted by Pooka1 View Post
                      There are IN TOTAL 35 patients studied, NONE long term. There was NO CONTROL GROUP in any TRS study. The import of this cannot be overstated. Many if not most of the patients were NOT in the peak growth velocity so their curves would be expected to be stable just sitting on the couch eating ice cream. A few were in peak growth velocity but we don't know the long term or have controls.
                      For clarity, 7 of the 15 had a height velocity of >7cm/yr (avg 9.5cm/yr). Of the 15 we had 13 patients with >7 months follow up and 6 of those had peak height velocity >7cm/yr. 3 of those 6 progressed during the follow-up period. 1 had an initial curve >50° and the other had a HT curve. The other 3 patients,(2 of them had >13cm/yr), we have 19-39 months follow-up and all saw a reduction of curve size. They were also TL/L curves.

                      Originally posted by Pooka1 View Post
                      He also will say he disagrees with Mooney in the need to brace during peak growth velocity. He will correct me on any of this if it is wrong.
                      I don't know that I have an opinion about needing to brace during peak height velocity. I know I've disagreed with Mooney's assertion that once the initial training has been done there is no need for follow-up training. I'm not sure what you're thinking about with the bracing.

                      Originally posted by Pooka1 View Post
                      He is very sanguine and realistic about this research of his to his great credit.
                      TRS is an entirely open question at the moment. Thirty five short-term cases doesn't move the needle one way or the other.
                      I wish I could say differently, but I can't and won't. I believe in its potential because of evidence that is difficult to describe in a manuscript, e.g. One patient with documented progression and lots of growth saw a reduction during training, stopped training and saw an increase in curve, started training again and saw another reduction in curve. There was another 1 or 2 with similar results. But since the intervals weren't as tightly controlled (although they were still in the 4-6 month range) it would make the study even more sloppy to try and describe this variable finding.

                      I also think that our patient population was extremely biased in two ways. We got patients that either had little risk for progression and so they enrolled sort of as a "sure, why not" kind of thing. The other type of patient was "we're not going to do a brace so we'll try anything". So we had a handful of "can't hurt" and a handful of "last resort" patients. As an aside, this is also part of what led me to plan a hypothetical study that trained patients before they reached a certain size, i.e. the W&W period. You can't do a study on the 'left-overs'.

                      Originally posted by Dingo View Post

                      Paging Dr. McIntire!

                      I can find pages of exercise links for HYPERkyphosis i.e. hunchback. A few studies (Spinal extension exercises prevent natural progression of kyphosis) found that exercise was an effective treatment for hunchback. But I can't find anything for flat-back.

                      Are there exercises for Hypokyphosis? I've seen mention that tight chest muscles and weak back muscles contribute to hunchback. If tight chest muscles contribute to hunchback, could chest exercises treat flat-back by creating more kyphosis?

                      Thanks in advance!
                      Perhaps this is why the PI of our study didn't want to do extensions, especially if doing this had been shown to reduce HYPERkyphosis.

                      I'm not sure what types of exercises would be useful for hypokyphosis.

                      Originally posted by Pooka1 View Post
                      A colleague of mine wanted to start a "Journal of Zero" where everyone could publish very high quality studies that would have showed something had it been there but it wasn't there.
                      Yes, please.


                      Originally posted by Pooka1 View Post
                      There is a consensus that there is anterior overgrowth in IS. The vertebra have been measured. The question is whether it is primary.



                      http://web.jbjs.org.uk/cgi/reprint/85-B/7/1026.pdf
                      This above study is pretty interesting. They don't discuss the heuter-volkmann principle though. So I'm guessing they either are assuming that it's part of it or they are simply trying to characterize the forces involved in rotation. Either way, it seems to me that the anterior overgrowth is due to an unloading of the anterior portion and a loading of the posterior portion. I think the data in the above study supports that as well although I didn't notice that they mention it. The anterior portion in AIS vertebrae are taller than the age matched controls and the posterior portion is shorter. This matches Stokes (H-V principle) work nicely that shows compression of one side stunts growth and causes an overgrowth of the contra-lateral side. If it were a pure overgrowth of the anterior portion, I'm not sure there would be stunted growth on the posterior side. Or rather, it doesn't make sense to me how the forces involved in that scenario would induce stunted growth. Therefore it seems to me that the opposite, i.e. force on the posterior portion unloads the anterior portion, makes the most sense.

                      There is a debate about this (I think it was also listed in your links). I might read through that to see what they say.

                      Comment


                      • #71
                        Originally posted by Kevin_Mc View Post
                        For clarity, 7 of the 15 had a height velocity of >7cm/yr (avg 9.5cm/yr). Of the 15 we had 13 patients with >7 months follow up and 6 of those had peak height velocity >7cm/yr. 3 of those 6 progressed during the follow-up period. 1 had an initial curve >50° and the other had a HT curve. The other 3 patients,(2 of them had >13cm/yr), we have 19-39 months follow-up and all saw a reduction of curve size. They were also TL/L curves.
                        Ah okay. That's important information.

                        I don't know that I have an opinion about needing to brace during peak height velocity. I know I've disagreed with Mooney's assertion that once the initial training has been done there is no need for follow-up training. I'm not sure what you're thinking about with the bracing.
                        Wow I need to up my game; That is the second time I misquoted you. My memory is not trustworthy it seems. You have addressed Mooney's idea that a brace is not needed if the patient is doing TR because I asked you about it. I now think you may have say some in the research community might think Mooney's statement was reckless. I will try to find the exchange at some point when I am not so bone tired. :-)


                        I wish I could say differently, but I can't and won't. I believe in its potential because of evidence that is difficult to describe in a manuscript, e.g. One patient with documented progression and lots of growth saw a reduction during training, stopped training and saw an increase in curve, started training again and saw another reduction in curve. There was another 1 or 2 with similar results. But since the intervals weren't as tightly controlled (although they were still in the 4-6 month range) it would make the study even more sloppy to try and describe this variable finding.

                        I also think that our patient population was extremely biased in two ways. We got patients that either had little risk for progression and so they enrolled sort of as a "sure, why not" kind of thing. The other type of patient was "we're not going to do a brace so we'll try anything". So we had a handful of "can't hurt" and a handful of "last resort" patients. As an aside, this is also part of what led me to plan a hypothetical study that trained patients before they reached a certain size, i.e. the W&W period. You can't do a study on the 'left-overs'.
                        Well, as pilot studies go, the fact you got it to peer-review and publication is a huge credit to you. This research is challenging to say the least. I am still bothered by Mooney's squirelliness on this in not answering your direct questions, in his business dealings with the Medex (or whatever) guys, in double publishing data (blame here also goes to the peer reviewers), and in not reporting on the few year follow up of the original twelve assuming he could have done so. It could be he knew what happened to those patients and just didn't like the data, especially if he was in discussions with the Medex folks at that time. If that were the case and he double published the original set then words would fail.

                        This above study is pretty interesting. They don't discuss the heuter-volkmann principle though. So I'm guessing they either are assuming that it's part of it or they are simply trying to characterize the forces involved in rotation. Either way, it seems to me that the anterior overgrowth is due to an unloading of the anterior portion and a loading of the posterior portion. I think the data in the above study supports that as well although I didn't notice that they mention it. The anterior portion in AIS vertebrae are taller than the age matched controls and the posterior portion is shorter. This matches Stokes (H-V principle) work nicely that shows compression of one side stunts growth and causes an overgrowth of the contra-lateral side. If it were a pure overgrowth of the anterior portion, I'm not sure there would be stunted growth on the posterior side. Or rather, it doesn't make sense to me how the forces involved in that scenario would induce stunted growth. Therefore it seems to me that the opposite, i.e. force on the posterior portion unloads the anterior portion, makes the most sense.

                        There is a debate about this (I think it was also listed in your links). I might read through that to see what they say.
                        Hey! I have no idea. I am saying it is easy to get the idea from the literature that there is a research consensus that anterior overgrowth of the spine is an issue in AIS. I think they are saying that happens before H-V can kick in, no? Anterior overgrowth explains the hypokyphosis that is commonly seen. I'll leave chicken-egg issues to your guys. This stuff is very dicey in my LAY opinion. Not as dicey as the biochem or genetics but still dicey. LOL.
                        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


                        • #72
                          Originally posted by hdugger
                          I'm not sure that's a detailed-enough distinction to uncover some of the associations. In particular, I think (and some research suggests) that very high levels of athletic activity - high enough to delay menstruation - are associated with increasing curve size. Putting those "super athletes" into a larger group of "athletic" kids is going to hide their contribution. I'd like to see something that correlated "hours a day exercising" with curve size and see what that showed.
                          "Conclusion. Our results demonstrate that systematic exercising is probably not associated with the development of AIS. Actively participating in sports activities doesn’t seem to affect the degree of the main scoliotic curve either."


                          Agree Hdduger. The above conclusion is too general, by far; run 40 miles a week as a 12 - 13 yr old with 20 degree curves and the vertebral weight stack will increase that curve in no time.
                          07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
                          11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
                          05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
                          12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
                          05/13: (12yrs) <25, >22cms height, puberty a year ago

                          Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

                          Comment


                          • #73
                            Originally posted by Pooka1 View Post
                            I have no idea.

                            I do know for a fact that lateral curvature and rotation are not tightly coupled and you can have a wide range in rotation with a given Cobb angle. At fusion, both my daughters had about the same curve, Thing 1 had a 58* and Thing 2 had a 57*. But Thing 1 was extremely rotated and it was obvious to lay folks something was radically wrong. Thing 2 had no visible rotation standing up. The only way even I could tell she had a high angle curve is to ask her to stand relaxed facing me and drop her arms by her sides. One arm was somewhat closer to her body than the other. That's it. That difference was due to the different amounts of rotation even with the same Cobb angle.
                            Reading through these posts again and finding important info I missed.
                            07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
                            11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
                            05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
                            12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
                            05/13: (12yrs) <25, >22cms height, puberty a year ago

                            Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

                            Comment

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