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Another study finds assocation between HYPOkyphosis and Scoliosis

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  • #46
    I posted the x-ray to my best friend, a heart surgeon in Prague. He pass them on to a spine surgeon who will "rigorously determine precise Cobb angles" using the same vertebrae for the apex and two most tilted in relation within each curve.
    As the x-ray show, however, even the apex of T curve looks to have moved from T8 to T7 (imo).

    The x-rays are located a few posts back
    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


    • #47
      Originally posted by TAMZTOM View Post
      The x-rays are located a few posts back
      You need to upload them from your computer. There is no link to her x-rays.
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

      Comment


      • #48
        Originally posted by rohrer01 View Post
        . But thinking of Elisa's son, didn't they do a ligament release before putting him in traction so that his spine could straighten? It makes me wonder why they don't do everyone that way. I realize that his curve was HUGE, but I'd bet we would see a lot better corrections than we do if that was done (not necessarily the traction but the ligament release).
        I'm really interested to learn more about Elias' "posterior release". I know that it is possible to have discs removed from the spine posterially now, as one of my friends had this done during his complicated surgery for kyphosis, and certainly it sounds preferable to the open thoracotomy that I went through for a thoracic anterior release when I was ten. I also had a release followed by halo traction followed by fusion and Elias' experience sounded very similar to mine, so it would be very interesting to know if his "posterior release" was the removal of discs or if it involved the cutting of ligaments instead. Elisa, do you know any of these details please?

        Comment


        • #49
          There is some "play" in reading these angles even among experts. Note the range on the same radiographs for Martha Hawes, a plant pathologist who is viewed as a god-like entity to some although there is no evidence anyone else has been able to benefit from her techniques. She used many techniques to improve her scoliosis, some of which are listed in this publication.

          http://www.scoliosisjournal.com/cont...-7161-4-27.pdf

          So the point is these guys are clearly using different end vertebra to get the wildly different measurements. The authors associate themselves with the most conservative decrease.

          By the way, the technique list omits at least one from an earlier publication, hours and hours of work each day. This is what I wrote abut the problem...

          --------------

          From the 2009 paper on Hawes... another poster claims it is a myth that Hawes did hours and hours of daily work on her scoliosis...

          Table 1 outlines her methods of treatment - none of which involve 4 hours a day of exercising for years and years - a myth that I'm glad to see set to rest in this report. From 1964-1974 she used calisthenics for about 30 minutes daily; 1974-1991Calisthenics, stretching, plus aerobics (biking, jogging) 60 min daily; 1991 Deep tissue massage 60 min daily; 1992-2001 Daily home mobilization exercises (no strengthening or aerobic) + some other intermittent therapy; 2001-2005 daily mobilization, strengthening & aerobic exercise 40-50 min daily.
          I responded that Hawes doing hours and hours of exercise every day for years was NOT a myth. In a previous article on her case...

          http://www.scoliosis.org/resources/s...on_spr2002.pdf

          From January 1993, one of the authors (WJB) provided instruction, support, and evaluation of posture and movement. Sustained pressure applied directly to muscle spasms, or manual traction to stretch the torso,was used by the patient to relieve pain as needed (4 h daily through 1997).
          Okay so she did this for FOUR hours every day for FIVE years. The daily effort spent on this component of her treatment is the ONLY one left out of the table in the later publication and is therefore conspicuous by its absence. I don't know why it was omitted from the table.

          And I don't know why the dates for the various treatments don't match exactly between the two papers. Seems strange.

          Hawes is a plant science professor and therefore NOT a nut. I will give her the benefit of the doubt on any differences between the two papers.

          But let's not go on saying the 4 hours a day for years is a myth, shall we?
          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


          • #50
            Originally posted by TAMZTOM View Post
            Even this disparate experiences in these few posts indicate an incredibly unscientific approach to a foundation stone of diagnoses. Decisions are made based on these 'random' x-rays (e.g., my daughter stuffed into a brace made for someone with entirely different curves, hip height, etc.
            PS: I've now had 4 different measurements of the curves: T curve ranges through 44, 40 36 and 32; L curve ranges through 42, 37, 28 and 27; these measurement were taken by two surgeons and two orthotists. FWIW, I measured the latest x-rays and 35 and 27.
            Trying to upload the comparative x-ray photo now...

            Comparative curves photo
            [ATTACH]1126[/ATTACH]
            After looking at Tamzin's x-rays, even though the measurements are different, the curves look the same to me. Her posture is quite different in both pictures. It is evident that she is leaning to the right in the first one and standing up straight in the second one. Her arms are also positioned differently. If I were a doctor, which I am not, I would go with the second one as it looks more natural even though her arms are up. It would be nice to see what she looks like with arms down and standing normally for her. I think that would be the most accurate. I know they do bending x-rays to determine exactly whether a curve is structural or compensatory. It looks, to my untrained eye, that Tamzin has two structural curves.

            Scoliosis aside, I read, while doing research on Chiari Malformations, that a scoliosis surgery is usually not successful in relieving pain unless the Chiari release is done first, as the Chiari causes painful symptoms in and of itself. She is still growing. If she is not in pain, that is great. She may develop pain later as she grows, just something to keep in mind and watch for. As you know, I'm sure, the Chiari 1 Malformation prevents the normal flow of CS fluid from the brain to the spinal chord. This might be something to think about later on down the road, especially if she becomes symptomatic. If she were my child, I would be taking her to a neurologist and addressing that problem first and foremost and worry about the scoli later (as far as taking her to doctors is concerned).

            It's good that she is so physically fit. IF you do choose surgery on down the road, I'm sure she will have a much easier time recovering. I can see that you are doing everything to avoid that possibility, and you seem to be a very dedicated father. She's lucky to have such a concerned and INVOLVED dad. Keep up the research. You have the advantage of having doctor friends who can put you in touch with the very best!
            Be happy!
            We don't know what tomorrow brings,
            but we are alive today!

            Comment


            • #51
              Originally posted by Dingo View Post
              Rohrer01Nobody really knows why TRS works.


              Actually, nobody really knows IF TRS works. Let's not forget that the data out there on it is extremely limited and debatable. Caution needs to be observed because I have seen several participants on this thread recommend it to parents confidently like it is a proven and effective treatment. It's ok to suggest it, but please, make it clear that the minimal evidence available is extremely inconclusive at this point.
              Gayle, age 50
              Oct 2010 fusion T8-sacrum w/ pelvic fixation
              Feb 2012 lumbar revision for broken rods @ L2-3-4
              Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


              mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
              2010 VBS Dr Luhmann Shriners St Louis
              2017 curves stable/skeletely mature

              also mom of Torrey, 12 y/o son, 16* T, stable

              Comment


              • #52
                Appreciated objectivity and oversight, thanks. ROHER01's comments are in green!

                Originally posted by rohrer01 View Post
                After looking at Tamzin's x-rays, even though the measurements are different, the curves look the same to me. Her posture is quite different in both pictures. It is evident that she is leaning to the right in the first one and standing up straight in the second one. Her arms are also positioned differently. If I were a doctor, which I am not, I would go with the second one as it looks more natural even though her arms are up. It would be nice to see what she looks like with arms down and standing normally for her. I think that would be the most accurate. I know they do bending x-rays to determine exactly whether a curve is structural or compensatory. It looks, to my untrained eye, that Tamzin has two structural curves.
                Originally posted by rohrer01 View Post

                I've seen x-rays showing curve reduction over 'n' years and observed the same apices and relative geometry with double curves. I agree, Tamzin's curves "look the same" in this regard. The degree of curvature is reduced in both curves. Two orthotists, two spine surgeons and our paediatrician have measured both x-rays--wide range of measurements; my friend in Prague has also shown the x-rays to a neurosurgeon, a physio specialising in scoliosis and a spine surgeon, all in agreement that the curvature is less. I still agree with your point, the structure of both curves is unchanged. Postural and proprioceptive improvement has, IMO, shifted the approx. 6 degrees of normal spinal flexibility in Tamzin's favour. Tamzin's scoliosis will worsen, IMO, if I don't use these improvements to now effect 'structural' reduction of the curves. My estimate, knowing Tamzin and knowing her supine measurements, is that we could knock another 5 - 7 degrees off each curve with exercise alone. Even that further improvement isn't sufficient. Hence the forthcoming brace.

                PS: her arms are not up the 2nd x-ray; that is her standing, arms down, in what is now--after 4 - 5 months training--a natural posture for her. Video would be illuminating, but I'm reluctant to post video of my daughter on an easily accessible forum.

                Scoliosis aside, I read, while doing research on Chiari Malformations, that a scoliosis surgery is usually not successful in relieving pain unless the Chiari release is done first, as the Chiari causes painful symptoms in and of itself. She is still growing. If she is not in pain, that is great. She may develop pain later as she grows, just something to keep in mind and watch for. As you know, I'm sure, the Chiari 1 Malformation prevents the normal flow of CS fluid from the brain to the spinal chord. This might be something to think about later on down the road, especially if she becomes symptomatic. If she were my child, I would be taking her to a neurologist and addressing that problem first and foremost and worry about the scoli later (as far as taking her to doctors is concerned).

                We already have a forthcoming joint consultation with a neurosurgeon and a neurologist--I wanted balanced input. Tamzin's symptoms manifested in Jan 2011: right hip pain (severe) for 3 weeks, appetite gone, insidious curves went ballistic (she swam, ran, did some gymnastics, etc--many parents and coaches saw her, no one saw anything--nothing, even in a bikini top swimming in California last April). She has some "numbness" in her left groin, this improving since July (Tamzin says it was "8 out of 10" in July, down to 3 - 4 now. Right thoracic pain, especially when correcting, right around the thoracic apex (T8); her rhomboid and trapezius look, to me, hypertrophic (sic?). I don't know if the numbness and thorax pain are caused by the Syringomyelia (fluid from C3 to T11), the scoliosis, both--or some other goddamn bloody thing! All sysmptoms, for the moment, are diminishing (I hesitate to say resolving). The scoliosis is "in all likelihood"--according to the not very convincing medical opinion so far--a symptom of the Chiari and SM. I've read about differential brain to skull growth ratios in 10 - 12 girls, increased skull capacity resolving the Chiari, increasing CSF flow and fluid being assimilated by the body (or even spontaneous rupture of the syrinx resolving the problem). I'll absorb everything from the neurologist and neurosurgeon, then reflect. I will not allow surgery initially; we'll have another MRI in 3 months to monitor the fluid and Chiari; we're also closely monitoring every known (to us) symptom and will be guided by these observations.

                It's good that she is so physically fit. IF you do choose surgery on down the road, I'm sure she will have a much easier time recovering. I can see that you are doing everything to avoid that possibility, and you seem to be a very dedicated father. She's lucky to have such a concerned and INVOLVED dad. Keep up the research. You have the advantage of having doctor friends who can put you in touch with the very best!


                Because Tamzin has loads of growth left, doing a Chiari skull remodelling job will itself require repeat surgery, possibly 3 - 4 times over say 6 - 9 years. Piercing the dura to drain the fluid can cause leaks, nerve damage, etc., but say she's lucky and only requires 2 - 3 operations for that. Months of recovery for such a small and light wee girl would let the scoliosis ravage her body, so she'd need spine surgery. Let's conservatively say that'd involve 3 - 5 surgeries over the period. I believe, at the moment, that if I open the surgical door, Tamzin will be destroyed, mentally, physically and emotionally. SO I NEED TO WORK HARDER TO FIX ALL THIS STUFFFFFFFFFF.....

                Thanks for your analysis, greatly appreciated.
                Last edited by TAMZTOM; 11-21-2011, 09:09 AM.
                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


                • #53
                  Originally posted by leahdragonfly View Post
                  Actually, nobody really knows IF TRS works. Let's not forget that the data out there on it is extremely limited and debatable. Caution needs to be observed because I have seen several participants on this thread recommend it to parents confidently like it is a proven and effective treatment. It's ok to suggest it, but please, make it clear that the minimal evidence available is extremely inconclusive at this point.
                  Agree completely. I've now read the papers on it and am very wary of using it with double curves. Many Schroth exercises, however, work on the same principle of derotating the rib cage; directed breathing, shoulder and hip counter-rotations and appropriate muscular contraction are used instead of a weight-lifting machine.
                  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


                  • #54
                    Originally posted by TAMZTOM View Post
                    Agree completely. I've now read the papers on it and am very wary of using it with double curves. Many Schroth exercises, however, work on the same principle of derotating the rib cage; directed breathing, shoulder and hip counter-rotations and appropriate muscular contraction are used instead of a weight-lifting machine.
                    On the TRS, there is a problem of double-publishing the ENTIRE earlier data set in a second publication by Mooney. He included the first 12 patients as if they were new patients. The data are identical so he in fact just double published. If you don't know this, it appears there are 12 more cases than there actually are.

                    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.

                    Dr. McIntire, who studied 15 of these 35 will admit all this. 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. 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.
                    Last edited by Pooka1; 11-21-2011, 10:26 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


                    • #55
                      Originally posted by Pooka1 View Post
                      Dr. McIntire...disagrees with Mooney in the need to brace during peak growth velocity.
                      I haven't noted this before, thanks. My wife and I, coincidentally, have been pondering whether it's been fortuitous that Tamzin hasn't been successfully braced to date. Her proprioception and sole reliance on muscularity to hold her curves may rebound in her favour, even when we put her in the Spinecor. Mr Cole, our referring (new) spine surgeon, pointedly remarked she was in these regards.

                      PS: Tamzin is 10.5 years old...i.e., slap bang in the middle of peak growth velocity for girls?
                      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


                      • #56
                        Just to be clear, Mooney claimed on no basis whatsoever that bracing is not needed when doing TRS. Dr. McIntire is not so "reckless" and disagrees with that as far as I know.

                        Of course I disagree with not bracing being "reckless" because the evidence case is still out on bracing and all surgeons familiar with the literature would be forced to admit that.
                        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


                        • #57
                          Originally posted by Pooka1 View Post
                          Just to be clear, Mooney claimed on no basis whatsoever that bracing is not needed when doing TRS. Dr. McIntire is not so "reckless" and disagrees with that as far as I know. Of course I disagree with not bracing being "reckless" because the evidence case is still out on bracing and all surgeons familiar with the literature would be forced to admit that.
                          The body is a brace; for us, I don't believe it's sufficient. Rigid bracing concerns me, especially during growth spurts. Spinecor appeals for many reasons (less atrophy, less restrictive, less rib distortion, easier to wear, etc.). I believe that Tamzin, despite her strength, needs apical brace pressure 20 hours + per day, PLUS ALL her exercising.
                          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


                          • #58
                            Originally posted by TAMZTOM View Post

                            Because Tamzin has loads of growth left, doing a Chiari skull remodelling job will itself require repeat surgery, possibly 3 - 4 times over say 6 - 9 years. Piercing the dura to drain the fluid can cause leaks, nerve damage, etc., but say she's lucky and only requires 2 - 3 operations for that. Months of recovery for such a small and light wee girl would let the scoliosis ravage her body, so she'd need spine surgery. Let's conservatively say that'd involve 3 - 5 surgeries over the period. I believe, at the moment, that if I open the surgical door, Tamzin will be destroyed, mentally, physically and emotionally. SO I NEED TO WORK HARDER TO FIX ALL THIS STUFFFFFFFFFF.....

                            Thanks for your analysis, greatly appreciated.
                            I wouldn't necessarily jump to that conclusion until you talk to the neurosurgeon and neurologist. IF her scoliosis is a result of her neurologic problems, it may very well stop the progression of her scoliosis. With how fit she is, I doubt that a Chiari release would take months to recover from. Children are very resiliant and heal much more quickly than adults because they are growing. I know you are working hard to minimize the need for surgery, but please don't feel like a failure if it comes to that. Just know you have prepared her the best that you can. Your young lady has a lot going wrong with her nervous system and spine. It's not your fault. I'm glad she enjoys the exercises she does, but if it gets to a point where you are having to force her, then it may be time to back off. You don't want to accidentally make her feel like she is somehow 'not normal' because she has these problems. If that is the case, then her problems will define her life instead of the important things like who she is as a person, her gifts and abilities, goals, etc. that should define her. I've met too many people that define themselves as the victim of their circumstances/illnesses. Again, I'm not saying at all that this is what you are doing. You seem to be very observant of her psyche as well as her physical problems, it's just a caution. Keep up the good work. You and your wife have much to be proud of in your children!
                            Be happy!
                            We don't know what tomorrow brings,
                            but we are alive today!

                            Comment


                            • #59
                              Originally posted by rohrer01 View Post
                              I wouldn't necessarily jump to that conclusion until you talk to the neurosurgeon and neurologist. IF her scoliosis is a result of her neurologic problems, it may very well stop the progression of her scoliosis. With how fit she is, I doubt that a Chiari release would take months to recover from. Children are very resiliant and heal much more quickly than adults because they are growing. I know you are working hard to minimize the need for surgery, but please don't feel like a failure if it comes to that. Just know you have prepared her the best that you can. Your young lady has a lot going wrong with her nervous system and spine. It's not your fault. I'm glad she enjoys the exercises she does, but if it gets to a point where you are having to force her, then it may be time to back off. You don't want to accidentally make her feel like she is somehow 'not normal' because she has these problems. If that is the case, then her problems will define her life instead of the important things like who she is as a person, her gifts and abilities, goals, etc. that should define her. I've met too many people that define themselves as the victim of their circumstances/illnesses. Again, I'm not saying at all that this is what you are doing. You seem to be very observant of her psyche as well as her physical problems, it's just a caution. Keep up the good work. You and your wife have much to be proud of in your children!
                              Very thoughtful and appreciated words rohrer, thanks.

                              I think you perfectly expressed some of the issues . "...it may very well stop the progression..." The jury is out on stopping progressive scoliosis with a Chiari release. The papers don't mention how many of those who didn't progress also exercised, were braced, etc. Absent additional progressive signs of neurological impairment caused by the Chiari induced fluid build-up, I wouldn't treat the assumed Chiari cause of the scoliosis to hope for curve improvement. (PS: we're still awaiting analysis of a separate brain scan taken last week...there may be fluid pressure in the brain.) A Chiari operation would remodel her skull using bone taken from C1 and possibly C2. She's growing. Hence it'd need to be done again or can cause disproportionate growth. Draining the fluid is a separate operation and has many risks. With L3 and T8 apices on her curves, most of her spine would be fused.

                              Your concern for Tamzin herself says a lot about you--you're a good person. Please believe me when I tell you that NOT ONCE has Tamzin felt forced to train or exercise. We are lucky that Tamzin is Tamzin--she is the most competitive person I have ever met. She has loved training and sport since she was 2 yrs old. She doesn't feel normal, she wants to be and is different. She knows in exact detail all the conditions she has and the repercussions; she treats it all with respect and total commitment to beating the stuffing out of the lot of them. Some people may misinterpret my posts as me pushing Tamzin too hard, when the fact is Tamzin pushes ME to the limit to keep pace with her. She is mightily impressed at her strength and health INCREASES SINCE she's been diagnosed. She loves pushing herself. (We reign her in often rather than push her as hard as she wants to push herself.)
                              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


                              • #60
                                Originally posted by TAMZTOM View Post
                                Very thoughtful and appreciated words rohrer, thanks.

                                I think you perfectly expressed some of the issues . "...it may very well stop the progression..." The jury is out on stopping progressive scoliosis with a Chiari release. The papers don't mention how many of those who didn't progress also exercised, were braced, etc. Absent additional progressive signs of neurological impairment caused by the Chiari induced fluid build-up, I wouldn't treat the assumed Chiari cause of the scoliosis to hope for curve improvement. (PS: we're still awaiting analysis of a separate brain scan taken last week...there may be fluid pressure in the brain.) A Chiari operation would remodel her skull using bone taken from C1 and possibly C2. She's growing. Hence it'd need to be done again or can cause disproportionate growth. Draining the fluid is a separate operation and has many risks. With L3 and T8 apices on her curves, most of her spine would be fused.

                                Your concern for Tamzin herself says a lot about you--you're a good person. Please believe me when I tell you that NOT ONCE has Tamzin felt forced to train or exercise. We are lucky that Tamzin is Tamzin--she is the most competitive person I have ever met. She has loved training and sport since she was 2 yrs old. She doesn't feel normal, she wants to be and is different. She knows in exact detail all the conditions she has and the repercussions; she treats it all with respect and total commitment to beating the stuffing out of the lot of them. Some people may misinterpret my posts as me pushing Tamzin too hard, when the fact is Tamzin pushes ME to the limit to keep pace with her. She is mightily impressed at her strength and health INCREASES SINCE she's been diagnosed. She loves pushing herself. (We reign her in often rather than push her as hard as she wants to push herself.)
                                Wow, I'm really 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 if 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 to depression if things don't go exactly as planned. Best wishes to you and your whole family. I'll definitely be following along!
                                Last edited by rohrer01; 11-21-2011, 04:58 PM. Reason: major typos
                                Be happy!
                                We don't know what tomorrow brings,
                                but we are alive today!

                                Comment

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