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Thread: Can conservative treatment permanently reduce or eliminate AIS curves?

  1. #16
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    Quote Originally Posted by Pooka1 View Post
    48 patients hand selected out of how many treated? Thousands? Are they doing continued PT? Is there something unusual about this small group? Late-diagnosed EOS?

    23 hours a day plus an hour of PT every day. This reminds me of the claim that if you laid in bed 24/7 during the growth spurt a curve would not progress. This is why studies report stats on an intent to treat basis.

    Did you read the study? It appears that 73 AIS kids were treated at that clinic from 1994 to 2009. Of the 73, 48 met the inclusion criteria for the study. No clinic with one orthotist is going to be treating thousands over that time period. Why do you automatically assume dishonesty? They left double curve cases out of the included cases which makes the results better, but even with treating just the single curves, it is pretty impressive. I've been told by at least 2 orthotists that said something to the effect of, "give me just those single curve and low riser score kids and we can come close to those results too". The orthotists currently are not only considering it possible but expecting to have dramatic curve reductions in most of these kind of "easier" cases. The current Cheneau derivative braces are better now than they were in the 1994 to 2009 timeframe.

    I would be willing to bet that most if not all AIS is late diagnosed EOS. Our daughter's shoulders and hips were and are perfectly level. She would have probably made it to AIS without being diagnosed if our son's more obvious scoliosis did not clue us in. There is not evidence that AIS ever gets better when untreated, no matter when it started....and no one knows when an AIS case started.
    Last edited by Dustin76; 06-06-2020 at 12:02 AM.

  2. #17
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    Quote Originally Posted by Pooka1 View Post
    Fifty adolescent females.

    Since 1976, we have been treating thoraco-lumbar and lumbar idiopathic curves with the Progressive Action Short Brace (PASB).

    Seems like operatic levels of data selection and that group is highly unusual in some respect.
    This study still show that AIS curve correction is possible, even though they may be giving the impression that they did it more frequently than they really did. Even if it was being done rarely back in the 70s and 80s, It's not crazy to think that the the methods would improve and more routine results would occur over time.

  3. #18
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    Quote Originally Posted by Dustin76 View Post
    Did you read the study?
    Yes.

    It appears that 73 AIS kids were treated at that clinic from 1994 to 2009.
    Symphonic level of data selection.
    Sharon, mother of identical twin girls with scoliosis

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  4. #19
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    Of the three studies, this one has the strongest most robust design...

    Another:
    Negrini S, Donzelli S, Lusini M, Minnella S, Zaina F. The effectiveness of combined bracing and exercise in adolescent idiopathic scoliosis based on SRS and SOSORT criteria: a prospective study. BMC Musculoskelet Disord. 2014;15:263. Published 2014 Aug 6. doi:10.1186/1471-2474-15-263
    They admit they had no control group. And continued PT in these patients should be disclosed if true. If exercising the rest of your life is required to maintain a correction, how many people are going to be able to do that?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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    "We are all African."

  5. #20
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    Quote Originally Posted by Dustin76 View Post
    Why do you automatically assume dishonesty?
    Dishonesty is the wrong word. As Richard Feynman said...

    "The first principle is that you must not fool yourself and you are the easiest person to fool."
    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. #21
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    Quote Originally Posted by Dustin76 View Post
    IYou have said yourself that AIS curve correction is impossible. Where do you get this idea?
    Well I don't think I stated it that way. I try to be extremely careful about these things and probably said it has not been shown to date. That is different from impossible.

    I have an open mind on everything that has not been definitively disproven. Permanent curve correction absent PT for the rest of one's life has not been disproven. It just hasn't been shown with any rigor or on a large enough scope and scale to matter to the average patient.

    Last, I would not say this is my idea. Because this is not my field, I don't have serious independent ideas. All I can do is observe any consensus among people in this field. They are best positioned to weigh in. Similarly I highly doubt any of these scoliosis researchers would claim to have serious independent ideas in my research field which is not even medical. In fact people highly trained in one field are the least likely people to dabble in another field. That's because they knew what they did to get to the cutting edge in their field and know they didn't do that in the other field.
    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. #22
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    Quote Originally Posted by Dustin76 View Post
    This study still show that AIS curve correction is possible, even though they may be giving the impression that they did it more frequently than they really did. Even if it was being done rarely back in the 70s and 80s, It's not crazy to think that the the methods would improve and more routine results would occur over time.
    I'd suggest that you talk to an orthopaedist who is an ADULT deformity specialist. They're the ones who see these kids once they're adults. While it's possible that there is an entire population of people who were braced when they were younger, and who never see a specialist as an adult, but I sort of doubt it. Most adult patients with idiopathic scoliosis were braced when they were kids, and there's a reason they're in a surgeon's office.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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  8. #23
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    As far as I can tell, all three of those studies involved PT. I wonder if these small groups were the ones who continued PT after the brace came off.
    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. #24
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    Quote Originally Posted by Pooka1 View Post
    As far as I can tell, all three of those studies involved PT. I wonder if these small groups were the ones who continued PT after the brace came off.
    Sharon, I think that's a sure bet. I guess you could look at some of the authors and see what they are doing....

    Dr Weiss was in China a few years ago bracing. With 3-4% of 1.4T population and with repeated 3D printings, sure sounds like a gold mine to me....

    I noticed some tethering activity online in India looking at braided tethering materials recently, but didn't look any further... Add India, and you have 1/3rd of the planet doing braces and PT in those 2 countries alone. Mao had no idea because the sales figures are higher than the abacus can handle. (Chinese scoliosis forum humor)

    Many members here braced years ago. Many of us did the same things trying to hang in there, and it is interesting to see or hear about since this forum started up. I suppose that many scoliosis patients that did brace 20 years ago will start showing up at scoliosis centers soon....

    It's nice to see Dustin's kids improve....If your going to do anything at all, there needs to be improvement. As far as how long a child has to continue bracing and therapy is a hard decision to make. If the child is positive and then suddenly decides he or she doesn't want to continue, I don't think I would push them too hard. The same problems that cause scoliosis are still there, it's not like you have this miracle correction and place bets it will hold. Fused spines done before the Harrington hardware era (cast scolis) can progress over decades....

    Karen Ocker was a prime example of this and she needed revision surgery and she was fused. (By Dr Cobb around 1958) She had her internal brace. What is more effective? A fused spine or an external brace? (assuming that her fusion mass integrity was sound being done as a child)

    Every method that is used for scoliosis are attempts at "helping", not curing each patient. I think it's really important that each of us understands that.

    Ed
    49 yr old male, now 61, the new 61...
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    Dr Brett Menmuir St Marys Hospital Reno,Nevada

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  10. #25
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    Quote Originally Posted by titaniumed View Post
    Sharon, I think that's a sure bet. I guess you could look at some of the authors and see what they are doing....
    We know that PT alone can reduce curves though not permanently. Martha Hawes is an example. Unfortunately she appears to be perhaps the only example. She exercised for hours each day. I think the breathing exercises expanded her chest and drove the measurable straightening in the T spine as a matter of mechanics. She was probably a EOS case, not AIS. And she stopped publishing her results for some reason.

    If PT alone can decrease curves then a brace plus PT reducing curves might not be out of the question. What is still an open question is are these cases being reported dependent on PT to hold the curves? Given the totality of the data in hand, plus the exquisite level of data selection going on in 2 of those studies, it seems like these results are not going to be applicable to the great run of patients. In the third study which was more rigorous, the results were more variable.

    I guess the bottom line is that pediatric orthopedic surgeons are discounting these few studies for some reason. The SRS web site still maintains that bracing can only halt or slow progression. I suspect it is because of the small sample sizes and symphonic levels of data selection but they may have other reasons also. They need to advise the general population of patients, not some few who might be very different.
    Last edited by Pooka1; 06-07-2020 at 04:11 PM.
    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."

  11. #26
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    Quote Originally Posted by LindaRacine View Post
    I'd suggest that you talk to an orthopaedist who is an ADULT deformity specialist. They're the ones who see these kids once they're adults. While it's possible that there is an entire population of people who were braced when they were younger, and who never see a specialist as an adult, but I sort of doubt it. Most adult patients with idiopathic scoliosis were braced when they were kids, and there's a reason they're in a surgeon's office.

    Adult deformity specialists will see only those who are having problems after bracing attempts. They will have no first hand idea about those who were successfully braced. They can look at the same studies that I am looking at, except that they won’t have the time to do so unless they have dedicated time for research.

    The best way, in my experience so far, to find people that were successfully braced is to talk to orthotists and ask them to give my information to the parents/patients and then they can contact me if they are willing. People are very willing to share their stories and images. Many of these had a first bracing attempt that failed (Boston brace failure I’ve heard over and over again) and were told that surgery was the only option until they found a competent orthotist with an effective bracing system. Now of course this does not show how many are out there, but they are out there. And as many as I have been able to find without looking very hard makes me think that the best orthotists are leaving a significant trail of them. And the types of orthotists that were successful with them are the types that parents/patients need to find. Just like in all professions, bracing practitioners are not all the same.

    My feeling is that if orthotists are finding some measure of success with reducing AIS curves, then this success can be repeated with increasing frequency in cases that meet criteria for high probability of success, such as AIS with low riser, and good compliance with bracing.

    Of those who have been braced, I think there is a large population that was braced ineffectively due to some combination of poor braces, lack of skill by the bracing practitioners, not enough growth left, and non-compliance. I would guess these failed bracing attempts are clearly failed before or soon after bracing ceases. These people will not be doing well when reaching skeletal maturity and most likely will worsen as adults and end up in the care of adult scoliosis specialists.

    I know from first hand contact that there is a population out there that was effectively braced and maintaining most of their curve reductions as my wife and I are talking to more and more of them as time goes on. These, I would guess, are the people pretty unlikely to find themselves in surgeon’s offices later. Those bracing practitioners with the right braces, the right skills, enough time before skeletal maturity, and ability to convince parents/kids to be compliant, I believe, are having routine success in a significant portion of their cases. And by success, I mean reducing curves and having sustained curve reductions for years after bracing and beyond skeletal maturity.

    The studies that I reference in my literature review support the idea that people are maintaining for many years after being braced, and even more likely to have stable curves (curves with minimal worsening) because they were braced. A SOSORT award winning study, 2017 I think it was (see my literature review), found that post-brace curves do not worsen at the 1-2 degree/year rate that unbraced curves tend to and this is corroborated by a few other studies (see my literature review).

  12. #27
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    Quote Originally Posted by Pooka1 View Post
    Well I don't think I stated it that way. I try to be extremely careful about these things and probably said it has not been shown to date. That is different from impossible.

    I have an open mind on everything that has not been definitively disproven. Permanent curve correction absent PT for the rest of one's life has not been disproven. It just hasn't been shown with any rigor or on a large enough scope and scale to matter to the average patient.

    Last, I would not say this is my idea. Because this is not my field, I don't have serious independent ideas. All I can do is observe any consensus among people in this field. They are best positioned to weigh in. Similarly I highly doubt any of these scoliosis researchers would claim to have serious independent ideas in my research field which is not even medical. In fact people highly trained in one field are the least likely people to dabble in another field. That's because they knew what they did to get to the cutting edge in their field and know they didn't do that in the other field.
    ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
    These are direct quotes of yours from months ago:

    “As I recall, while most JIS cases entail progression, a fair number spontaneously correct. Anyone studying JIS and making claims abut JIS has to beat that background spontaneous correction. The other thing with JIS is that unlike AIS, braces seems to correct the curve at least in the short term. Are the chiros claiming the brace corrects AIS curves? That would be unheard of and almost certainly not true. In AIS, braces at best can prevent progression but never effect a permanent correction.”

    “Not AIS cases. Braces don't correct AIS curves. You must be referring to JIS cases.”

    "Nobody with any training will claim a brace can reduce an AIS curve. The only claim of all braces is that they can hope to prevent progression. The befores are controls for the afters. They will be in the running for the Nobel in physio or med if they can prove they are permanently reducing AIS curves outside the noise."
    --------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

    Permanent correction of AIS curves may not be happening on a large scale (if we keep saying it can't happen on sites like the National Scoliosis Foundation, we'll delay the large scale development needlessly), but there are enough orthotists (yes, even those that are highly regarded) reporting it and enough recent research to begin to corroborate it that organizations like the SRS need to put resources into specifically looking for it. Some literature reviewers outside of the SRS are holding out the possibility and finding that it is likely occurring in some frequency. I think there is enough evidence that it has been happening to seek out orthotists that have lots of references of patients that have "graduated" from their bracing and lots of current patients headed in the same direction. When I first came on this forum, it felt like anyone reporting such results should be regarded as crazy or dishonest. My own review of the literature says otherwise. When I combine that with what I am hearing from bracing specialists and their patients, it is too much to discount.

  13. #28
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    Quote Originally Posted by Dustin76 View Post
    ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
    These are direct quotes of yours from months ago:

    “As I recall, while most JIS cases entail progression, a fair number spontaneously correct. Anyone studying JIS and making claims abut JIS has to beat that background spontaneous correction. The other thing with JIS is that unlike AIS, braces seems to correct the curve at least in the short term. Are the chiros claiming the brace corrects AIS curves? That would be unheard of and almost certainly not true. In AIS, braces at best can prevent progression but never effect a permanent correction.”

    “Not AIS cases. Braces don't correct AIS curves. You must be referring to JIS cases.”

    "Nobody with any training will claim a brace can reduce an AIS curve. The only claim of all braces is that they can hope to prevent progression. The befores are controls for the afters. They will be in the running for the Nobel in physio or med if they can prove they are permanently reducing AIS curves outside the noise."
    --------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

    Permanent correction of AIS curves may not be happening on a large scale (if we keep saying it can't happen on sites like the National Scoliosis Foundation, we'll delay the large scale development needlessly), but there are enough orthotists (yes, even those that are highly regarded) reporting it and enough recent research to begin to corroborate it that organizations like the SRS need to put resources into specifically looking for it. Some literature reviewers outside of the SRS are holding out the possibility and finding that it is likely occurring in some frequency. I think there is enough evidence that it has been happening to seek out orthotists that have lots of references of patients that have "graduated" from their bracing and lots of current patients headed in the same direction. When I first came on this forum, it felt like anyone reporting such results should be regarded as crazy or dishonest. My own review of the literature says otherwise. When I combine that with what I am hearing from bracing specialists and their patients, it is too much to discount.
    Orthotists never see the patients after they've "graduated".
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  14. #29
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    Quote Originally Posted by Concerneddad View Post
    I'll just report my kid's bracing results over 10 months without comment. All measurements are mine. I finally got in back to work the other day so I can play with her last scans to my heart's content (I don't have a CD drive at home). Btw, bracing was 17.6 hours a day from 9/19 until 12/19, and 19.8 hours per day from 12/19 to 5/20. I've run the heat sensor chips.

    8/2019: Diagnosis. 38.5T/35.0L. Risser not observable due to poor scan quality, but very likely on the border between Risser 1 and 2. Note: The initial radiologist significantly undermeasured the top curve (s/he had 29) to the point where I think s/he was probably measuring from the wrong level. I'm 99% confident in this. I consistently measure the curve at 37-39, and eyeballing the scans, it's not really changed from subsequent scans.

    10/2019: First in-brace x-ray. 29.0T/28.0L. Risser solid 2. The ped-ortho is disappointed because of the "poor correction."

    12/2019: Follow-up x-ray. 37.5T/33.5L. Risser between 3 and 4 left hip, still Risser 2 right hip. I've measured these scans hundreds if not thousands of times, and I'm convinced there was small but observable correction.

    5/20: Follow-up x-ray. 39.0T/36.5L. Risser 4 -- left hip completely capped, right hip 85% capped. Definite progression from 8/19 scan, although slight. Interestingly it's all in L1 -- the distal vertebrae in both curves. I haven't measured the tilt, but eyeballing it is's 2-3 degrees more. L4/L5 tilt unchanged, T9/T10 tilt unchanged. Doc starts weaning off of the brace because she's basically mature.

    So, bottom line. I think the brace basically did what it was designed to. It achieved some modest initial improvement, but that went away after nine months or so. The good news is that it bought time until she could be skeletally mature. I think that's probably the realistic goal with bracing. Improve a couple of degrees, reset the clock, and slow down progression and buy time. For a lot of girls diagnosed in the 12-13 yo range, if you can buy a year, they'll hit spinal maturity in a sub-surgical range. I've also heard that bracing is especially good at keeping lumbar curves flexible so that if they do need surgery selective fusion is still on the table, but I'm unaware of any studies on that.
    If you don't mind my asking, what kind of brace was used and where did you go? I can see why they were disappointed with the in-brace correction of only 30% or less. Of all the kids that I have got to know in the last year where we go, the bracing practitioners are not satisfied if they can not get 80-100% correction at initial bracing in those with mid-30s degree or less curves and low Risser. They then aim for 100-110% correction progressively down the line. They say right up front that if they can't get good in-brace correction, there won't be correction of curves in the long term, just a chance of stopped or slowed progression.

    I definitely agree that if your practitioner's brace design only gets 30% initial in-brace correction, it did what it would be expected to do. That seems like an unacceptable in-brace correction as I understand it if it is a standard AIS Risser 1-2 case with curve in the mid 30s unless the patient's case was really out of the ordinary.

  15. #30
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    Quote Originally Posted by LindaRacine View Post
    Orthotists never see the patients after they've "graduated".
    They do where we go.

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