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Thread: Who Decides?

  1. #61
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    Quote Originally Posted by pooka1 View Post

    A rare thing....

    i agree with everything in ballet mom's post above, especially the points about (most) chiros.
    lol! .

  2. #62
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    Quote Originally Posted by Ballet Mom View Post

    That would prove nothing.
    True, but it would be some evidence

    Quote Originally Posted by Ballet Mom View Post
    I always wonder why things such as illegal drug use isn't blamed for the increase in autism. Why don't they blame that, seeing as recreational drug use keeps increasing and so does the incidence of autism? It seems just as likely. Why is it always medicine to blame, which has saved untold numbers of lives, versus they themselves introducing substances into their bodies that may have untold numbers of detrimental affects? It never ceases to amaze me.
    I think it much more likely (still highly unlikely) that it is the vaccines than illegal drug use. I think it would have been apparent by now if it were illegal drug use (because not everyone has used illigal drugs however virtually everyone vaccinates their kids). (It would have dawned on someone at one of their conventions as all the parents were out in the parking lot twisting up doobies. Although, I suppose it could have been missed (Thats why they call it dope)

    And Sharon, I didnt mean to imply you felt that way about bracing, although re-reading it that is the way it comes across.

    Regarding the whole proof and evidence thing - consider the emergency use authorization given to Peramivir. Check out the information sheet that comes with it. In Section 16, it lists the evidence from trials supporting it's use.
    No clear efficacy. Conflicting results from clinical trials. But, in a crunch, it is nice to have in the arsenal.

    I think there is some comparison to be made with the emergency use authorization of this drug for H1N1 and a parent choosing an alternative treatment for their childs scoliosis. The proof isnt there. There is some evidence. There is evidence it does not do harm. There are no proven alternatives.

  3. #63
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    Quote Originally Posted by Pooka1 View Post
    There is a reason chiros have the reputation they have. It's the same reason that Chirobase website is so chock full, bursting at the seams, of material.
    Texmarinemom would have a field day with what I'm going to say here but....

    Remember the Disney movie Pollyanna? There is a line in there where she quotes her father (who was quoting Lincoln)

    "If you look for the worst in people expecting to find it, you surely will"


  4. #64
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    Quote Originally Posted by concerned dad View Post
    True, but it would be some evidence

    I think it much more likely (still highly unlikely) that it is the vaccines than illegal drug use. I think it would have been apparent by now if it were illegal drug use (because not everyone has used illigal drugs however virtually everyone vaccinates their kids). (It would have dawned on someone at one of their conventions as all the parents were out in the parking lot twisting up doobies. Although, I suppose it could have been missed (Thats why they call it dope)
    LOL! They actually have conventions for this? It's worse than I thought.

    Actually, I think increasingly more people are not vaccinating their kids and at some point, a critical mass will be hit, unfortunately.

  5. #65
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    Quote Originally Posted by concerned dad View Post
    Texmarinemom would have a field day with what I'm going to say here but....

    Remember the Disney movie Pollyanna? There is a line in there where she quotes her father (who was quoting Lincoln)

    "If you look for the worst in people expecting to find it, you surely will"

    When you have a situation where no two chiros can point to the same spot on a radiograph where the "subluxation" is, then it's all "worst." There is no escape hatch for these guys.
    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. #66
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    Quote Originally Posted by Ballet Mom View Post
    LOL! They actually have conventions for this? It's worse than I thought.

    Actually, I think increasingly more people are not vaccinating their kids and at some point, a critical mass will be hit, unfortunately.
    That's right. I think everyone who doesn't have a medical reason (like an adverse reaction to the first shot in a series) to not immunize their children is banking on herd immunity. It is the height of selfishness and they know it.
    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. #67
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    Quote Originally Posted by concerned dad View Post
    True, but it would be some evidence
    The point of that story about one of my professor's seeing his draft manuscript sail through the air into the "circular file" is that you can't necessarily extract anything from a flawed study.

    The only evidence to extract is that it is damn hard to do controlled medical studies.
    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. #68
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    Quote Originally Posted by Pooka1 View Post
    That's right. I think everyone who doesn't have a medical reason (like an adverse reaction to the first shot in a series) to not immunize their children is banking on herd immunity. It is the height of selfishness and they know it.

    Yes, it's one thing for them to risk their own kids lives, but I know a lovely young man who has a mitochondrial disorder who absolutely cannot take the vaccines. Even a flu shot has him in the hospital for a couple of months recovering. So people like him are relying on the "herd" for protection....and now they are putting his life at risk also. And he is a lovely teenager. It breaks my heart.

  9. #69
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    Quote Originally Posted by Pooka1 View Post
    The point of that story about one of my professor's seeing his draft manuscript sail through the air into the "circular file" is that you can't necessarily extract anything from a flawed study.

    The only evidence to extract is that it is damn hard to do controlled medical studies.
    You are right, it is different for medical studies.
    Uncontrolled studies are "flawed" however they are ethical. And, although they "cant necessarily" extract anything from them, I hope they try their best to extract all they can.

  10. #70
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    If you are talking reduction in Cobb angle, then yes, they win the track record award. But, that is just one track in the world of scoliosis. If you are talking about reducing pain & increasing lung function, there are several "track records" that have been very affective for many scoliosis patients-Schroth, yoga, exercise, pain management programs.

    "The universe of track records?" I don't even know how to respond to this. I was unaware that the universe held a track record.

    Both blood transfusion and cancer treatment mean something, but not the same thing to everyone. As far as cancer treatment goes, personally, I would not rely on the track record here in the US. I have seen too many people die from the treatment, not the cancer. But, that is just my opinion. Your examples seem to point to parents who refuse treatment due to religious reasons, which is in no way the case in my situation, or the case in many others. Regardless, why isn't a judge banging down my door? Because, while my daughter is well within surgical range, it isn't an emergency. And, I am sick of it being treated as one the minute a patient hits the 40-50 degree mark. I am tired of parents being told "No, your child's surgery can't wait until summer." I am tired of hearing "there are no other options," when there are. It is not that there "are no other options," it is that the surgeons either don't know about them, or don't believe in them. That doesn't give them the right to claim that they don't exist. Case in point-my own, which happens to reflect that of many others I have spoken with: I had the option of VBS-but was told "there are no options." Had my 3 surgeons at the time had no idea who Dr. Betz was? I had the option of Cheneau/Schroth-but was told "there are no options." I had the choice to wait until summer for my daughter's surgery, or 2 years, or 3, or 10 for that matter. But, was told, "there are no options" "This can't wait until summer" and if I chose to do so, I would be endangering my child. Well, there were options-one being to wait. So, yes, I blame the surgeons for closing the doors to patients through their ignorance, and sometimes even their fear tactics, when they should either admit that there at least "might" be other options, or give up the position of door keeper. And, I see the same thing happening on the forum at times-the closing of mamamax's threads for one.

    I wasn't saying there are NO surgeons focusing on prevention, but how many-really? And, how many beyond bracing and surgical techniques? I realize no one can have all of the answers. Which is why, if they really cared to expand scoliosis care, they would rally for more integrated care, and step down from their position as the authority in scoliosis treatment (beyond surgery that is). If this is started sooner than later, then there will be others to steer the ship, or at least, to help steer the ship-thus the possibility for better care. But, instead they focus on surgery-which is what they should be focusing on.

    Yes, I can post the other options that did help. Waiting for one, which allowed my daughter to grow 4 inches (and whatever she has remaining), and give me time to search for whatever I can before she has reached maturity. Schroth and Cheneau for two. It has allowed my daughter to to increase her lung function, increase her core muscles, reduce her pain, and reduce her misalignment by over 4 cm. I will know Tuesday if her Cobb angle has progresses at this point or not. But, while I worry about Cobb angle, it is not the only factor driving my decisions. This may be where we differ.

    I understand that there may not exist enough "proof" out there in the literature that treatments like the above work. But, what are we supposed to do, wait around for them to come out while our kids get worse, or just listen to surgeons who give us limited options?

    I am not only assuming there must be good conservative treatments only because I want there to be. I am not that ignorant. I am not even just assuming-see above-there were other options-they just weren't expressed. And, yes, I was always free to explore other options, which I did, for 7 years and counting. But, while parents are doing this, not only are they losing time, but often times they are dismissed by their surgeon for doing so.

    Increased lung capacity can occur before a patient reaches surgical range. Some patients have reduced lung capacity with a 30 degree curve, while some at 60 degrees don't. I did not manufacture this issue, it actually exists.

    Fusion and revision actually only don't blow my mind. They used to, but they haven't for years. It is a very easy concept to wrap my head around. You are assuming this. I just want to try everything first to avoid both.

    I agree that perhaps the MD's/Phd's will be the ones improve scoliosis care-only time till tell.

    I am always considering my approach. I have always looked where I went wrong in the last 7 years, and have changed my approach many times to be more opened minded. But, I am not basing my opinions on my experiences alone. I am also basing them on the numerous parents I have spoken with who have had similar experiences. I am not talking about 1 or 2-but many.

    Saying I am trying to get blood from a stone, is like saying the orthopedists aren't capable of change. Or at least, the system in regards to scoliosis care isn't capable of changing, isn't capable of admitting that right now, scoliosis treatment is not enough. It is capable, and I think eveyrone will agree that it isn't enough. The only way it can be improved, in my opinion, is by an integration of several other types of specialists-but first, the surgeons have to either step down from the throne, or be de-throned from being the authority.

    In the end, I think like Concerned Dad said, it is fair that we can agree to disagree, which obviously in many cases, we do.

  11. #71
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    Quote Originally Posted by bas2101 View Post
    "The universe of track records?" I don't even know how to respond to this. I was unaware that the universe held a track record.
    No the "universe" of track records simply means ALL the track records out there. It is not mean the track record of the universe.

    When someone refers to the "universe" of something it just means everything within that something.

    In the end, I think like Concerned Dad said, it is fair that we can agree to disagree, which obviously in many cases, we do.
    Okay.
    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."

  12. #72
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    Quote Originally Posted by bas2101 View Post
    I understand that there may not exist enough "proof" out there in the literature that treatments like the above work. But, what are we supposed to do, wait around for them to come out while our kids get worse, or just listen to surgeons who give us limited options?
    I really like how this statement ties in with my comments about Emergency Use Authorization of drugs (and, similarly, compassionate use authorization).

  13. #73
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    Quote Originally Posted by concerned dad View Post
    I really like how this statement ties in with my comments about Emergency Use Authorization of drugs (and, similarly, compassionate use authorization).
    Disliking the fact that reality bites doesn't make it not so.

    We all wish there were effective preventative treatments obviously. It's just that some of us don't throw innocent professionals under the bus when making that point. Comments about giving up thrones are simply not rational when discussing orthopedic surgeons and their role in treatment.

    Anyone and everyone is free to develop an effective conservative treatment. The world is still waiting. It could happen though it is not likely to emerge from the present list as some of these modalities have been around for decades and are not obviously effective.

    My money is on the molecular guys to solve this, NOT the surgeons.
    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. #74
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    PS-

    Sharon-we are all biased-even when we do our best no to be. Claiming that science is the best game in town, is bias.

    Concerned Dad-The pretext for this thread was indeed in regards to who gets to decided what is or isn't discussed on this forum. But, it comes from the much larger picture of who gets to decide when it comes to our medical choices. We assume it is us of course, but often times-whether it be from lack of information, withheld information, judicial decisions, funds to pay for treatment, fear tactics, the squashing out of other choices, whatever-it is not.

  15. #75
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    Quote Originally Posted by bas2101 View Post
    PS-

    Sharon-we are all biased-even when we do our best no to be. Claiming that science is the best game in town, is bias.
    Oh really? What is better than the scientific method in rooting out bias and gaining REAL knowledge?

    Nothing.

    Science is the only game out there that is self-correcting and where you can actually get points for proving YOURSELF wrong.

    It is truly the only game in town for getting to the bottom of anything. This is not news.
    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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