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Thread: DD recently diagnosed -- any suggestions?

  1. #31
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    Quote Originally Posted by Pooka1 View Post
    I have never understood the use of height measurements in the context of scoliosis. The height is a net function of linear growth of the skeleton minus the "collapse" rate of the increasing curvature. When my one daughter's curve was increasing at about 5 degrees a month, she was also in a growth spurt (hence the curvature rate). We weren't measuring her height but I doubt she grew and may even have shrunk. She gained about 2 inches when she was hyper corrected. That reflects the true growth and could only be discerned after the fact of correction, not any measurement taken during the growth spurt.
    I was actually curious about this question -- for kids with scoliosis, does a growth spurt translate into height increase, or just curve progression? -- and this study (which is super interesting, at least to me) seems to indicate that it's both. For a few years after menarche, both braced and non-braced girls with scoliosis saw an increase in height *and* an increase in their progression. Interestingly, the height increase was about the same in both groups (4 cm per year at menarche, 2 cm a year after, and tapering off after that). Curve progression was way different though. Braced girls saw a drop in Cobb angle in the first year, but then a big jump in the second, which I assume is the curve going back to its initial size after the initial correction.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2753628/

    Anecdotally, my kid has been growing like a weed the past few years (4'11" at her 11 yo checkup to 5'9" today at 13.1 yo), and I'm sure that's when her curves turned up, so it's consistent with that.

  2. #32
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    Height really is the only thing we have, (for laymen). Next would be a visual inspection (Adam's test) looking for asymmetrical features, pain, if any, and then after would be an x-ray....Not having height would be similar to having your gas gauge broken in your car, not having any clue on fuel whatsoever. (unless you do some math) Height is one value to work with.

    Another thing that throws out everything is having a non idiopathic scoliosis or early onset or juvenile scoliosis before age 10 that has not been diagnosed by a doctor. Non-growth curve related....(Hope they don't find that left thoracic curve...)

    The study indicates both height and curve progression together as an average....its not every case.

    Cobb again is limited since it only tells you your coronal angle. Rotation "might" be relative to Cobb, but can vary and some scoliosis patients can have huge rib humps, thus the thoracoplasty (rib hump reduction) procedures or costoplasty testimonials we see once in a while. Its a good idea to inspect for upper right side rib hump increases, these will tell you if something is happening quickly. My lumbar hump came out of nowhere, and I knew something was wrong before my x-rays were shot. (Not that it mattered since I was 16)

    Trying to catch a scoliosis in young idiopathic scoliosis patients is not an easy thing. Doctors don't shoot x-rays unless something is wrong. There has to be a reason.

    We need a dog that's trained to spot scoliosis curves...."OMG the dog barked, did you hear that?""Its ok, it just the fire engines going by." (smiley face)

    "Wait a minute, Fido is trained for kyphosis only".

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #33
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    Update

    In brace x-ray today.

    Bad news: Not much correction. The thoracic curve looked "about the same." The lumbar curve measured 28 degrees braced (same doc measured it 32 degrees unbraced about seven weeks ago).

    Better news: Much better image of the iliac crest to assess Risser. I asked the doc about it and he looked at the printout and said "oh, it looks like she's farther along than we thought. For sure Risser 2, maybe coming up on Risser 3." I asked and he said that probably means she's out of the woods in terms of the curves really going haywire in the next six months or year (though they could continue to progress steadily for some time and very well could end up surgical). I blew up the image when I got home and she's DEFINITELY midway into Risser 3 -- the line is faint but unmistakable about two-thirds of the way across the crest. Daughter and wife confirmed independently when I asked "hey, see this line, how far does it go?". This is a LOT more consistent with menarche (11/18), peak height velocity (late spring/early summer 2018), Sanders score (5 as of nearly a month ago), and parental heights (I'm 5'8.5, her mom is 5'5", she's 5'9").

    Bottom line is we won't know until the out-of-brace x-ray in December, but I think there is a reasonable chance that she'll hit skeletal maturity somewhere in the 30s, probably around 36-37 or so. That's bad in the sense that it's a problem that she's going to have to watch, and even best case, she very well may need surgery at some point in her 30s (or 20s or 40s). It's good in the sense that it's an adult problem, not a teenage problem.

  4. #34
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    Getting back to this...

    In re Sanders et al. (2008)

    I wrote: "Just as an aside, I am glad they showed C.I.s and not p's. P hacking is rampant and some top medical journals are not only discouraging publishing p stats but some have banned it."

    Those are p's. I don't use them much and thought they were always shown as lower case so I assumed "P" was something else.

    I read the paper and have notes written on it but can't find it. I think it is at work. I may comment further. I think this was the study that was good in that they had one person reading all the radiographs.
    Last edited by Pooka1; 10-13-2019 at 09:11 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."

  5. #35
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    I also read the Escalada et al. (2009) paper titled, "Assessment of angle velocity in girls with adolescent idiopathic scoliosis"

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2753628/

    My main comment is they are working with an unusual group in terms of curve type and direction. As far as I know, right-sided T curves dominant the population. Couple that with the observation that L curves tend to progress less than T curves. To the extent their sample deviates from the actual population, their results will apply less.
    Last edited by Pooka1; 10-13-2019 at 09:11 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."

  6. #36
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    Quote Originally Posted by Concerneddad View Post
    In brace x-ray today.

    Bad news: Not much correction. The thoracic curve looked "about the same." The lumbar curve measured 28 degrees braced (same doc measured it 32 degrees unbraced about seven weeks ago).
    Yes but there was no progression.

    Better news: Much better image of the iliac crest to assess Risser. I asked the doc about it and he looked at the printout and said "oh, it looks like she's farther along than we thought. For sure Risser 2, maybe coming up on Risser 3." I asked and he said that probably means she's out of the woods in terms of the curves really going haywire in the next six months or year (though they could continue to progress steadily for some time and very well could end up surgical). I blew up the image when I got home and she's DEFINITELY midway into Risser 3 -- the line is faint but unmistakable about two-thirds of the way across the crest. Daughter and wife confirmed independently when I asked "hey, see this line, how far does it go?". This is a LOT more consistent with menarche (11/18), peak height velocity (late spring/early summer 2018), Sanders score (5 as of nearly a month ago), and parental heights (I'm 5'8.5, her mom is 5'5", she's 5'9").
    Yes this is a very good finding.

    Bottom line is we won't know until the out-of-brace x-ray in December, but I think there is a reasonable chance that she'll hit skeletal maturity somewhere in the 30s, probably around 36-37 or so. That's bad in the sense that it's a problem that she's going to have to watch, and even best case, she very well may need surgery at some point in her 30s (or 20s or 40s). It's good in the sense that it's an adult problem, not a teenage problem.
    That could be stable for a long time. We have had people on this group with 50* curves who remained stable for decades. One woman had fusion only because of pain, not progression. All in all the situation seems hopeful for your daughter.
    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."

  7. #37
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    It sounds like she has a Lenke 3C Double major curve. This is what I have, both T and L curves are balanced out quite well with a pretty good plumb. (within 5 degrees or so) Every once in a purple moon we see double majors here, but not often so I do remember. One was tethered by Dr Lonner a while back as an adult, sure would like to know how she is doing now. ??? I also attached the Kristen Birney bending video with Dr Lonner also. Age 12-1/2, T47/L48.
    https://www.orthobullets.com/spine/2...ication-of-ais

    https://www.scoliosisassociates.com/...ctive-surgery/

    I am not sure about if and when a curve actually becomes "structural", its about the bender x-rays. It all depends on how she bends out. This would be a good question to ask. Kids bend easier than adults. My spine was stiff like concrete when I was operated on at age 49. I didn't bend much. My Chiropractic adjustments had to be done with quite a bit of force. One time, I stated that I needed a heaver Chiropractor or 2 at the same time. (scoliosis forum humor) I thought it was hilarious, they didn't laugh.

    Usually with balanced S curves, (within 5 degrees) we don't have sagittal plane (Kyphosis and Lordosis) issues...(One benefit of the double major) We have good plumb, with a slight shoulder lean. Larger S curves above 40ish will have a right shoulder and a left lumbar hump. Your not seeing this now, are you? 2" left of center at the waist line. If you take your thumbs 2" left and 2" right of center and push at the waistline, does she feel any difference? I would ask her this. I could feel quite a bit of difference in muscle tension at the L1-L2 level. Rib hump you should see with an Adams test bent over.

    I agree with you on the skeletal maturity at 37 degrees....and it would be reasonable to expect roughly a .5 degree per year progression rate which would put her at approx 50/50 degrees 30 years from now in her early 40's. Yes, its an adult thing, and she is a scoli. She will learn and monitor her curves, its what we do. I progressed from a 50/50 at age 16 to a 70/70 by age 49, 20 degrees in 33 years. (with extreme physical spine abuse) She could also dwell, but in time, degeneration starts around age 36. From then on, its pretty much downhill from that point. We all have to deal with this.

    Talk to your surgeon about expectations with and without tethering, possible progression and so forth. Braces hold, they don't correct, and in brace doesn't matter when you are out of brace, we return like springs. If you push hard enough on a spine it will straighten it out, there is no doubt about that. Bracing for a few months is like checking your tire wear every month, results are going to be quite minimal. Its good that she held over the last 2 months.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  8. #38
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    Concerneddad, have the doctors mentioned anything about syndromic scoliosis versus AIS? The fact that your daughter is so tall compared to you and your wife might be consistent with her scoliosis being associated with some connective tissue issue like Marfans.

    My daughters are very tall although so is my husband. But they have certain skeletal characteristics consistent with Marfans or something related to that. They have hypermobile joints. There is a genetic test but it has a 10% false negative so we haven't done it; my daughters still have to get the aortic measurements the rest of their life no matter what the test returns. Importantly, there are many connective tissue disorders and only a few are named. Also in the case of Marfans, 25% of the cases are spontaneous mutations and do not show up in families as a hereditary pattern. In the case of my daughters, my husband's maternal family are all tall and thin and one of his cousin's had surgical scoliosis. But nobody died of a dissected aorta so I think if my daughters have Marfans, it is a spontaneous mutation. They are identical but curiously had different types of T curves and are likely to have different outcomes in the long run because of it.

    There is little research but at least one paper indicated these patients do not respond to bracing as much as AIS patients do.
    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."

  9. #39
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    Thanks, guys.

    Ed -- no humps now when standing. Her left hip is slightly higher than her right if you look closely, which is probably why her left leg has always seemed shorter than her right. Both humps are readily apparent when doing an Adams test.

    Sharon -- no one has suggested anything re: syndrome. I'm guessing the height is from my wife. Her dad is 6'5", and our daughter favors him strongly -- same hair color, same body shape, same complexion, etc. We also have nine year-old twin sons, and one of them projects out to be pretty tall probably 6'3" or so. (The other one, OTOH, is going to be about my height.)

  10. #40
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    17 Yr old tether S curve approx 60 degrees Dr Lonner

    Quote Originally Posted by titaniumed View Post
    Every once in a purple moon we see double majors here, but not often so I do remember. One was tethered by Dr Lonner a while back as an adult, sure would like to know how she is doing now. ???
    Here we go. 17 yr old S curve patient that was tethered by Dr Lonner. She was done in July 2017. Her curves look around 65 degrees.

    I had pretty much the same before x-ray in 1993.

    https://www.goodmorningamerica.com/c...rgery-53273524

    https://www.dailymail.co.uk/femail/a...s-surgery.html

    Below is my x-ray from 1993, 26 years ago. I was 35 years old then. Boy was that painful!!! I submitted to surgery at age 49.

    Ed
    Attached Images Attached Images
    Last edited by titaniumed; 10-14-2019 at 12:45 AM.
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  11. #41
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    Bracing works if done right

    Quote Originally Posted by Concerneddad View Post
    Hi. Daughter (just turned 13) was recently diagnosed. S-curve. Three docs have all measured her curves differently, but they average out to 32T/32L (one doc had the thoracic bigger, one had the lumbar bigger, and one had them the same). The ortho that she saw said it's 50-50 whether they'd progress to needing surgery if left untreated, so he prescribed a brace, which he said probably cuts those odds in half (if she complies). She gets that next week. Some concerns/questions:

    1.) The one thing I wasn't super happy about at her ortho appointment was the assessment of her skeletal maturity. When I asked, the doc just said "oh, her growth plates are still wide open, she has a lot left to grow." He did that without asking about menarche, growth spurts, etc, and he didn't do hand/wrist x-rays.

    This is important because I think she could be a lot more skeletally mature than he thinks -- her period was almost a year ago, and her peak growth velocity was probably about 16 months ago (we measured monthly and the markings are on the wall). Her growth also has slowed pretty significantly in past months (about six inches from 11 yo to 12 yo checkups, but only 2.5 inches from 12 yo to 13 yo). Based on that, just statistically speaking, I'd guess that she's more like Risser 2-3 and Sanders 5-6, which as I understand it, makes the possibility of significant future progression a lot less likely. Also, based on her lumbar image, it looks to me like there is "fuzz" running on the top of her iliac about a third of the way from the outside in -- though the scan cuts out the entire outside edge of the hip, so it's hard to know for sure. Unless that's a random shadow, that would mean she's well into Risser 2, right?

    2.) If she is as immature as the doc assessed, if she progresses even a few more degrees over the next few months, would she be a VBT/ASC candidate? My BIG concern is that the bottom curve is really low (centered at L3/L4), so if she had to get fused for the lumbar curve, it could be pretty catastrophic in terms of reduced mobility. She's also a super competitive athlete, to the point that her coaches have advised that while it's a long way off, she's currently in the range of girls who play in college in her sport. We definitely want to avoid fusing that low so she can keep playing (as well as avoiding the long recovery).

    3.) Any other suggestions? She has an appointment with another ortho in a few weeks to get a second opinion, so in addition to the above, we'll have the opportunity to ask additional questions if there is anything important.

    Thanks in advance!
    Before you choose surgery, please consider Scoliosis Care Centers in Campbell, California. The massive curve corrections that they discuss on their website are true. I have seen it first hand. I am a medical professional myself. They have only been doing this for 10 years, and their data is not yet published, but they are routinely preventing progression of curves and reducing curves in most cases as well with. Their primary tool is a unique bracing technique, but it is a program that includes other interventions as well. Your daughter would have a smaller window that a lot that they work with, but they are having success in lots, and I dare to guess most, of cases with 13 years olds. A Boston brace or something similar is from the stone ages compared to what they are doing. Orthopedic doctors will say it is not possible, because this new method has yet to hit the peer reviewed literature.

  12. #42
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    Quote Originally Posted by Dustin76 View Post
    Before you choose surgery, please consider Scoliosis Care Centers in Campbell, California.
    These are chiros advertising. Chiros are not trained to handle scoliosis and there is no evidence chiro can help scoliosis.

    Their primary tool is a unique bracing technique,
    Chiros doing bracing and not chiro? What can we deduce about chiro about that???

    A Boston brace or something similar is from the stone ages compared to what they are doing.
    What exactly are these chiros doing with bracing??? Which brace is not stone age??? Is there some reason you are not being specific???
    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."

  13. #43
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    ps. Chiros have no training in bracing. I don't know why that is allowed. Their training is in chiro subluxations of the spine which have been shown to be imaginary.

    When the evidence just wasn't there for the SpineCor brace, surgeons stopped using it. But chiros were offering it and making a mint. Chiros do not traffic in evidence-based anything.
    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."

  14. #44
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    Specifics for curve reducing bracing method

    Pooka1:

    I understand your skepticism. I am a physical therapist who is very skeptical of a lot of chiropractic methods, and I am a skeptic in general.

    Our son has a 24 degree curve that was identified in July this year and he is only 5 years old. I read all the pertaining peer-reviewed literature that I could find for scoliosis treatment, and was deflated to find that I would just be told to wait and see if it gets worse. We were referred to Shrinerís near where we live in Washington State, but we didn't go. In doing my online searches, I came across this place in California that claimed to be not only preventing progression of curves, but significantly reducing them with a bracing technique that is entirely their own. Compared to the literature, there claims seemed to be too good to be true. In addition, the person behind this is a chiropractor, so I initially dismissed this as fake.

    But in doing more research, I found no other alternatives. So I thought, why not give them a call. That call was at least convincing enough to do a Skype consult (free) with Dr. Matt Janzen, who started this method of scoliosis treatment. I now regret how short I was with him at first, but I immediately wanted to know why there is nothing in the literature about this method and why no one else seems to know about this and why every kid with scoliosis isnít going there. He explained that, about 10 years ago, he decided that there has to be a better way of addressing idiopathic scoliosis than the standard "wait and see method" until they reach bracing level. Then go to a brace that might slow progression until the 40 degree mark usually resulting in a recommendation for surgery.

    At this point, I will tell you that this guy has an understanding of the pertaining anatomy as well as any orthopedic surgeon. He is also a mechanical/fabrication whiz.

    Without disclosing proprietary information for a method that is really innovative and new by medical standards (10 years is nothing by medical standards), here are some keys to the method.
    1. The process to get the patient measured for the brace to have it be corrective is one-of-a-kind and Iím sure proprietary. I wonít describe it in detail, but it is genius.
    2. They rarely use x-rays (maybe one or 2 if needed). They use a stand-up, open MRI unit to get the baseline spine image and throughout the brace fitting and adjusting periods. These non-diagnostic MRIs only take 2.5 minutes (versus a typical diagnostic MRI that would be 30-60 minutes). They do as many MRIs (could be 10 or more but usually less than that) as needed to get the initial brace fit as good as they feel like they can. For example, my son was at 24 degrees out of brace. He is now at essentially neutral in brace Ė less than 2 degrees of lateral curve anywhere along his spine. It took repeated brace adjustments and 4 MRIs and even scrapping the first brace and starting a new one to get his spine to be neutral in brace. It then takes more adjusting to eliminate pressure points. The measuring and fitting process takes several days typically.
    3. Brace wearing for the typical idiopathic scoliosis that they treat is usually 23-24 hours per day and the braces are very snug. Bracing continues until skeletal maturity. After the puberty stage of rapid growth ends Ė usually around 13 or so for girls (probably 95% of who they see are girls Ė since most idiopathic scoliosis occurs in girls), brace time each day can sometimes be reduced.
    4. Matt Janzen believes that nerve tension (spinal cord and spinal nerves not growing fast enough to stay with spine growth) is a huge causative factor if the not the primary cause of what is currently known as idiopathic scoliosis. For this reason, in most patient cases, neural stretching is a big emphasis to go along with bracing.
    5. Another part of the program for many patients is a custom ďstretching chairĒ that stretches against the curves even more aggressively than the brace, but just for 20-30 minutes, 2-3 times per day. This unit stretches rotationally at any angle as well as addressing the curvature.
    6. There are some additional and more minor measures that they sometimes employ as well.
    7. Key to their method is the idea of addressing the scoliosis three-demensionally. Reducing rotation is as important as reducing lateral curvature and they go together usually.
    8. They are aware of the danger of rib deformation with long-term bracing, and their system accounts for this.
    9. They have exercises to address the trunk strength loss that can occur with long-term bracing.


    This is better than their average results, but we met a family there with a 10 year old girl who arrived a year ago with an S shaped scoliosis with two, 60-degree curves. Her curves are now in the 20-25 degree range out of brace and in the single digits in brace. Of course her parents were told at Shrinerís and Seattle Childrenís hospital that surgery was the only option and that she would be limited her entire life. Her long-term outlook is now looking amazing! She could be scoliosis free when bracing is done.

    We talked to family after family from all over the US and all over the world that were in the midst of various stages of correction of curves.

    This method started 10 years ago. They now have many former patients, told that surgery was their best hope, who now live normal lives. Some donít even technically have scoliosis anymore with curves in the single digits.

    Have they had some patientís that didnít get better? Yes. Is this rare for them? They say yes and Iím now inclined to believe them. They point to compliance with bracing time, because not everyone keeps their kid in brace for the prescribed times. And even with good compliance, there could be some cases that donít work out for whatever reason. When we were there with our son, we talked to as many families as possible that had been coming for a while, and they were all seeing curve correction to some degree.

    Back to the question of why they do not have published research in peer-reviewed journals. They are only 10 years into this. To do studies that meet standards, they will have to have their braces electronically monitored for patient time-in-brace, just like previous studies of the Boston Brace and other braces. This will be expensive. They are working on a plan for this. In the mean time they are loaded with patients from all over the world and trying to hire to keep up.

    What we seem to have here is a really smart and capable guy with a sound knowledge of anatomy and physiology that has invented a method superior to any other. He happens to be a chiropractor. When he pointed it out to me, I realized that there is a lot in the medical literature that supports his method Ė relating to prolonged stretch on body tissues and nerve tension being a factor in scoliosis. Itís just that no one else has pieced it together and attempted a solution, or was capable of pulling it off.

    Are some chiropractors quacks? Sure. Are some MDs/surgeons quacks? Definitely. I gave this guy the benefit of the doubt, and he is legit.

  15. #45
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    Dustin76, excellent post. Really nice. As a PT you are trained in a science. Chiro is not a science. I will respond to some of your points on your other thread.
    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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