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Thread: Cobb angle in braced patients and the future

  1. #1
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    Cobb angle in braced patients and the future

    Here is a quote from a recent paper in Scoliosis Journal that was co-authored by Joe O'Brien that concludes, in part, that two RCTs of brace treatment have or should settle the question of brace efficacy (that they work)...

    This is even more striking when it is recognized that the new epidemiological data indicate that 58 % of patients between 20 and 40 will progress to surgery, or above 50 of Cobb Angle, if left untreated [6].
    http://scoliosisjournal.biomedcentra...013-015-0046-7

    Well doesn't between "20 and 40" about cover the population of "successful" bracing treatments? So essentially, 58% of "successfully" treated brace patients are expected to progress to surgery. Then we have the ~50% of patients who are braced needlessly (would not progress anyway) but who are also in this curve magnitude range. Fifty-eight percent of them are expected to progress to surgery.

    So now we need data actually showing that curve magnitude is rigorously tied to progress to surgery in that angle window. If that isn't rigorous tied together, I think this blows bracing completely out of the water despite the two RCTs that are touted in this paper.

    What am I missing?
    Last edited by Pooka1; 03-16-2016 at 08:19 AM.
    Sharon, mother of identical twin girls with scoliosis

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  2. #2
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    Well Sharon the flip side is that 42% of the patients would never progress to surgery anyway, which means that potentially 42% of scoliosis kids are being subjected to the very difficult brace treatment needlessly. That's a huge number, then you have to factor in the failure rate of bracing, and you have a majority proportion of pts being braced unnecessarily. That should give serious pause to any family facing a scoliosis diagnosis.
    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

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    Excellent points, Gayle.

    And that is just to the point of skeletal maturity. Some of these "bracing successes" will get surgery anyway due to later progression or pain from damage. I would love to see a followup on kids who ended bracing north of 40 degrees. If some or many of them go onto need surgery, the actual bracing success is still wildly inflated. Weinstein and company casually only focus on the microsecond of maturity or actually the microsecond of no more than 25% growth remaining. And they STILL to my knowledge have not published the ending Cobb angles for the BrAISt study. A child with a 49 degree curve with up to 25% growth remaining is a "success". I am wondering if they want to preserve the original conclusion at all costs.
    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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    I was braced at age 13, pre-menarchal for double curves, about 33 and 34 degrees. I had my last x-Ray when I was deemed skeletally mature at age 14 and hadn't worn the brace in at least 6 months. That x-Ray measured in the very low 20's on both curves, and no further x-rays were done until I had pain at age 42. Those curves measures low 20's on thoracic and 35 on lumbar. Two years later the lumbar curve had shot up to 47, and you know the rest of my story! Hardly a bracing success.
    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

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    Quote Originally Posted by leahdragonfly View Post
    I was braced at age 13, pre-menarchal for double curves, about 33 and 34 degrees. I had my last x-Ray when I was deemed skeletally mature at age 14 and hadn't worn the brace in at least 6 months. That x-Ray measured in the very low 20's on both curves, and no further x-rays were done until I had pain at age 42. Those curves measures low 20's on thoracic and 35 on lumbar. Two years later the lumbar curve had shot up to 47, and you know the rest of my story! Hardly a bracing success.
    I am so grateful you and others are on this forum, Gayle.

    I am thinking it is probably past time that Weinstein and company would publish any more data from BrAIST. We may never know the final curve range (and how many had growth remaining) of the "successful" bracing patients.

    As Dr. McIntire said when this paper first came out, there is no way he would have gotten away with not including the end curves in his studies. Yet Weinstein and company are allowed to publish without that KEY piece of information. I think this issue has departed science and arrived at politics.

    As Arsenio Hall used to say on his late night talk show... "things that make you go, 'hmmm....'".
    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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    I have been asked to contribute to a journal produced in the UK for private physios regarding my personal experience of scoliosis. My main tack is going to be to expose the lack of conservative treatment options within the NHS due to lack of published evidence.

    I am going to refer to the paper. But ( and this is because I have been ill and only just coming back to form) can you advise where I could find the references that are listed by number at the bottom of this paper.

    Also in the paragraph before CONCLUSION I am unsure if nos 17, 18 and 35 are being included as good studies or damaging studies? I would quite like the article to be a little bit scientific as well as personal experience.
    Last edited by burdle; 03-17-2016 at 11:09 AM.

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    Hi Burdle,

    I think the three RCTs being touted as settling the question are 6 and 10 for brace treatment and 17-19 for PT.

    Most of these references are not publicly available but you can write to the authors and sometimes get the papers.

    In re the refs in the paragraph before conclusions, I think they are saying those are good studies but charges of bias cloud the acceptance of the results. Not sure.

    I am not convinced there is enough evidence to say conservative treatments save many folks from surgery in the long run even if they save them in the short term.
    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."

  8. #8
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    Hi,

    thanks Pooka1.


    Part of my article will be to question physios for abandoning even getting to grips with treating scoliosis for pain relief. . People who don't get to surgery levels but have significant curves are not catered for in UK at all. Hence the vacuum filled by chiros. I would like to see more 'targeted' physio for the curves rather than the one-size fits all which we get. Some physios will say that they know all about scoliosis and then just treat the back as they would anyone else who experiences pain. My point is that they don't really get educated/trained in types of scoliosis because they focus on whether there is evidence that physio can 'reduce' a curve where I just want to see them helping with the specific pains from the specific condition.

    Physio in the UK is under the NHS unlike chiro and osteopaths but because there is no evidence it if very hard to get referred for pain relief- but they are looking for the wrong sort of evidence.

    It is a condition that I find the patient is much more expert in the condition than the treating physician.

  9. #9
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    Quote Originally Posted by burdle View Post
    I have been asked to contribute to a journal produced in the UK for private physios regarding my personal experience of scoliosis. My main tack is going to be to expose the lack of conservative treatment options within the NHS due to lack of published evidence.

    I am going to refer to the paper. But ( and this is because I have been ill and only just coming back to form) can you advise where I could find the references that are listed by number at the bottom of this paper.

    Also in the paragraph before CONCLUSION I am unsure if nos 17, 18 and 35 are being included as good studies or damaging studies? I would quite like the article to be a little bit scientific as well as personal experience.
    Burdle,
    I haven't looked at those papers. Here in the States most insurance companies will pay only for a limited number of PT sessions per year for those of us who have pay for insurance and we have to pay out of pocket until a set deductible is met (varies from policy to policy). But they still count the number of sessions even if you are paying out of pocket to meet your deductible. If you are poor enough, and depending on the State you live in, you can get State Medicaid. In the States that have a good Medicaid program they will pay for unlimited doctors/PTs/chiros you need along with dental and vision. So here, unlike the UK, if you're poor you better hope you live in a "good" State. For instance, Arizona Medicaid only covers pregnant women and children. The woman loses coverage six months after the baby is born but will cover just about everything except Rx, dental, or vision. It doesn't cover men at all, no matter how poor they are. At least that's how it used to be. I don't know now that "Obamacare" kicked in. But in Iowa they will pay full dental I mean caps on rotten teeth, root canals, the works (I know someone who had "meth mouth", from smoking crystal meth, and they made her stunning!), vision with glasses, the full medical treatment with unlimited PT included. My State will pay really well for medical/PT/chiro vision with limited selection of glasses and dental (routine cleanings fillings and extractions) unlike Iowa that pays for all dental services. Those are just some contrasting States for sure. But the States are willing to pay unlimited PT if you are poor and qualify, so I'm surprised that the NHS in the UK won't cover those services. Over here it almost pays to be poor. I'm not sure if the NHS is for lower income people or if they even have insurance over there. I watched a British show with a particular doctor who expressed frustration over the NHS in some cases because he felt that people needed surgery and the NHS wouldn't pay for it. However, he had "private pay" patients. They were seen in a different office and operated on with nicer facilities with a private room, while the NHS patients shared a ward with several beds in it. There was definite discrimination. Do you have to have a referral for a physio from a doctor and can you "private pay"? Over here we do need a referral no matter who pays. Is it just a matter of getting the NHS to pay for it even if you do get a referral? I guess I'm a bit confused about the NHS. You can get into trouble with or without socialized medicine because some people abuse it and/or the "country" sees that as an area to cut funding when funding is needed elsewhere. And there are some people who just somehow fall through the cracks. So the people are the ones who suffer, like those two boys in Canada with 120o+ curves. You are honored to be asked to contribute your story to this article. I guess my case would be ignored by doctors over there because I'm under 50os, no matter the other consequences the curve has caused? So you are one who falls through the cracks, I take it. Are you offered any treatment at all, even medication?


    I personally experienced pain relief from PT. I saw many that were of no help. But the doctor said he knew of one who was really good and referred me to her specifically. I was on narcotic pain medicine at the time and the exercises she gave me targeted my areas of pain because she listened to me. After only about a month, when my muscles got used to the exercises, the pain was gone and so were the narcotics. PT DOES work in some cases. Those exercises no longer help me and I've seen many PTs that have tried many things and nothing works anymore for me. So I can't say it will work for everyone, but there are many it can work for if you get the right person to listen and target your painful areas. It would save the NHS money on doctors visits from people who are in a lot of pain. Physios cost a lot less than doctors and medications!

    Sorry for all the questions and not meaning to derail by talking about health care systems. However, cost could be a driving force in your favor, too.
    Be happy!
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  10. #10
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    Quote Originally Posted by burdle View Post
    Hi,

    thanks Pooka1.


    Part of my article will be to question physios for abandoning even getting to grips with treating scoliosis for pain relief. . People who don't get to surgery levels but have significant curves are not catered for in UK at all. Hence the vacuum filled by chiros. I would like to see more 'targeted' physio for the curves rather than the one-size fits all which we get. Some physios will say that they know all about scoliosis and then just treat the back as they would anyone else who experiences pain. My point is that they don't really get educated/trained in types of scoliosis because they focus on whether there is evidence that physio can 'reduce' a curve where I just want to see them helping with the specific pains from the specific condition.

    Physio in the UK is under the NHS unlike chiro and osteopaths but because there is no evidence it if very hard to get referred for pain relief- but they are looking for the wrong sort of evidence.

    It is a condition that I find the patient is much more expert in the condition than the treating physician.
    First of all I thought Rohrer's response was pretty interesting. I don't know much of the NHS in the UK either.

    I know a little about Canada where they keep medical costs down by limiting the number of doctors. We were friends with a doctor from South Africa who was waiting to get a slot so he could practice medicine. He couldn't see patients before that opened up obviously. That is why those two boys in Canada weren't seen... I think the few pediatric orthopedic surgeons were too busy handling trauma cases. I think the comment was there were only 2 ped orthopedic surgeons in all of British Columbia. I may be misremembering that.

    I take your point about focusing on curve reduction but that completely ignores the ability of PT to treat pain in people. That is not right to restrict PT for pain just because it hasn't been shown to help prevent or slow curve progression. Apples and oranges.

    I think it's a damn shame that PT is not covered for people under surgical range who probably would resort to surgery if they were in the US and have it covered. So these people are stuck because they can't get PT and they can't get surgery. That is not right.

    I hope that changes.
    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. #11
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    [QUOTE=rohrer01;165862]Burdle,
    #I'm surprised that the NHS in the UK won't cover those services.


    The NHS covers physio but because physios haven't got to grips with Scoliosis- it is often fairly basic. Also you often don't get to see the same physio. I pay privately for physic ( 1xweek) but feel that I shouldn't as the NHS should offer better.

    Even private physios are not really up to speed with Scoiosis- you might find one that takes an interest but physio is based on you getting better - rather than pain management.

    I get medication on NHS and surgery would be covered also

  12. #12
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    [QUOTE=burdle;165865]
    Quote Originally Posted by rohrer01 View Post
    Burdle,
    #I'm surprised that the NHS in the UK won't cover those services.


    The NHS covers physio but because physios haven't got to grips with Scoliosis- it is often fairly basic. Also you often don't get to see the same physio. I pay privately for physic ( 1xweek) but feel that I shouldn't as the NHS should offer better.

    Even private physios are not really up to speed with Scoiosis- you might find one that takes an interest but physio is based on you getting better - rather than pain management.

    I get medication on NHS and surgery would be covered also
    It's about the same here. When I was prescribed PT for the first time as a teen, they gave me generic back strengthening and core strengthening exercises. The exercises were actually painful and, if I had kept them up, would have made my hypokyphosis much worse over time. They didn't bother tailoring them to MY needs. I only found the one, like I mentioned, who really focused on my needs and prescribed exercises that don't cause compression of the spine. Unfortunately, these are too painful for me to do anymore. I tried to "work through the pain" a few years ago thinking I was just out of shape in those particular muscle groups. They didn't work any longer and I couldn't work through the pain even after a month of trying. It just made the pain worse.

    It's hard to find a really great physical therapist who will listen to your particular needs. And if you've gone past your limit of visits, you have to self-pay.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

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