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Thread: Scoliosis Boot Camp

  1. #61
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    Quote Originally Posted by Accina57 View Post
    I tell you the truth and want to show you proof
    Good that you want to show us proof. I'll look forward to the before/after radiographs.

    Thanks in advance.
    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."

  2. #62
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    Quote Originally Posted by Accina57 View Post
    If I can't leave you a message about alternative scoliosis treatments maybe I can leave you a message about my Lord and Savior Jesus Christ. www.needgod.com
    How is CLEAR any different from any other religion that relies on faith and never ponies up evidence?
    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."

  3. #63
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    well, isn't the upcoming conference in France...the SRS scoliosis conference information... posted here on forum somewhere...? i know i skimmed some of the topics to be presented...and some conservative tx approaches are included in their list of subjects to be covered....
    ......perhaps Clear will present there to let everyone know of their
    incredible curve reductions....it would surely be an appropriate place
    to present such information, among doctors who specialize in treating
    scoliosis in patients of all ages...i noticed that lectures on everything from
    infants to adults to people who are ill with serious medical problems in
    addition to having scoliosis will be topics covered...

    jess

  4. #64
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    Accina...

    It may seem like you're being picked on, but you're being treated no different from anyone who has been extensively grilled because they actively try to convince others that "their" treatment is the right one. Pooka1 and Mariaf are classic examples. (Who, by the way, I believe both have them have posted before and after xrays to back up their claims.) Thousands of people were taken in by Arthur Copes and a bunch of people who stood to make money by selling his methods to scoliosis patients. As far as I know, there is not a single patient who was helped in the long term by his methods. So, false claims being made on public forums is a reality. I personally have never understood why anyone would ever try to convince another person that a given treatment is the only right one. Have you thought about how you'd feel if someone chose to put their child through CLEAR and that child later died of pulmonary or heart issues because they chose CLEAR instead of surgery?

    No one has a problem with you posting your story, as long as it's not embellished, and as long as it doesn't appear to be embellished. If it appears to be outside the norm, it seems fair to be asked to show radiographic proof. We have to be able to self police this forum, in order to protect ourselves from the zealots who are all too willing to make false claims in order to prey on a potentially vulnerable group of people.

    Since you're new, you probably don't know that religious discussions ARE NOT ALLOWED. So, I'm requesting that you (as well as POOKA) stop the religious part of this discussion immediately so that I don't have to shut the whole thread down. Thank you.

    --Linda
    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

  5. #65
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    I can't say that I have never seen anyone touting an alternative treatment post before and after radiographs. I can say it is few and far between and is dwarfed by the before and after fusion radiographs. That is probably no coincidence.

    The other issue is while I can maybe believe some of these reductions, the issue is how long do they last and do these kids realize they have to do PT the rest of their lives? What if they get Dengue Fever!!!!!! Any PT done after the point of maturity is not going to be permanent except perhaps Hawes changing the distance between her sternum and spine but maybe not even 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."

  6. #66
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    Linda,
    Feel free to delete my posts I had no idea of there was to be no religious conversation here. Didn't mean to offend anyone. Would rather not deal with such self-righteous mean spirited people. I still live in a place where people love each other and try to help and share HONEST experiences. Just too naive I guess. Just expect people to be kind and caring about each other. Obviously not the case here. Thanks for the heads up Linda. I won't be using this as a place to try and express Honest opinions. I will be seeking other places to carry our message of non-surgical treatment.

  7. #67
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    Quote Originally Posted by Accina57 View Post
    Linda,
    Feel free to delete my posts I had no idea of there was to be no religious conversation here. Didn't mean to offend anyone. Would rather not deal with such self-righteous mean spirited people. I still live in a place where people love each other and try to help and share HONEST experiences. Just too naive I guess. Just expect people to be kind and caring about each other. Obviously not the case here. Thanks for the heads up Linda. I won't be using this as a place to try and express Honest opinions. I will be seeking other places to carry our message of non-surgical treatment.
    Here's an example of someone being "driven away" I suppose. But does anyone think she is taking valuable evidence of PT efficacy with her? If not then I don't see the problem.

    I think this poster honestly believes what CLEAR told her. That is not and never will be the issue.
    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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    Also, we should never get to the point where we can't ask questions in order to try to understand how (and if) a particular treatment method works - and discuss all the pros and cons and what evdience exists regarding effectiveness, long-term outcomes, etc. - whatever that treatment method may be (bracing, fusion, VBS, tethering, CLEAR, etc.).
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  9. #69
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    To me, the fact that someone is not willing to defend their words just gives them a lot less credence.
    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

  10. #70
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    i do not understand being offended by questions...
    patients are used to asking lots of questions about recommended
    tx...whether surgical or not...at least, smart patients are.

    i have not had surgery...but i did NOT know enough about steroids
    to know that they can crash one's cortisol level...and sure enough,
    my wonderful sacroiliac joint injections gave my body too much steroid
    (done by a pain doctor in CT) and my cortisol level dropped to near zero...
    very dangerous....i was lucky that it came back after 6 months of resting...
    it felt like i had mono!! maybe if i had asked more questions, the
    doctor could not have overdosed me with steroids the way he did....

    i am just trying to say that i see questioning as a good and smart thing...
    it adds to the knowledge that people have, and i see that as a positive....
    EVERY medical tx has pros and cons...that is the nature of the beast.

    also....i do not know any forum that is about medical tx that accepts
    religious comments...this is NOT a forum about religion....

    jess
    Last edited by jrnyc; 05-28-2013 at 11:56 AM.

  11. #71
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    I normally do not read CLEAR threads but made an exception when I was implicated in this one. I sent accina57 a "private message" in hopes of her reading it. I'm going to make what I said public:

    Accina,
    Just because there's no religious conversation here isn't a reason to leave. You have to understand that this forum is for a worldwide population representing 1000's of religions. Religious debates could EASILY overshadow the purpose of the forum which is scoliosis. There are plenty of threads where people say, "I will pray for you." That's allowed, just not the other stuff. Also, if your daughter was truly helped by CLEAR, all people want to see is the evidence. That's a fair question because other's might want to try it. But they want to make sure that they're not throwing away $1000's for an empty dream. Not everyone here is mean spirited. In fact, most people are very kind. Even the seemingly mean spirited ones have a very soft side and can be really helpful. You can block people you don't want to see posts from.
    Take care.
    My reason for sending this was not to endorse CLEAR, but promote this forum as a place to come to and share and learn. There will probably come a time when she realizes that CLEAR isn't all that it's cracked up to be. How many people have we seen on here that enthusiastically endorsed CLEAR for a LONG TIME come back and tell their horror stories or of their disappointments? This woman shouldn't be afraid to come back here.

    Yes, she should back up her claims with evidence. But some so-called professionals can be VERY convincing by taking x-rays immediately after a treatment. That keeps people coming back. I went through my share of "treatments". The doctor, yes this one really was a doctor (D.O.), used scare tactics to get my mom to bring me there. He promised a cure and didn't deliver.

    Although, she shouldn't have called anyone "self-righteous". I don't recall anyone calling her any names. That's just anger talk. I thought she might have been a CLEAR plant, too, until she posted her religious thoughts. Then I was pretty certain she wasn't. Anyway that's just my two cents. As far as I'm concerned this should be the end of it for this thread unless she comes back. It is for me, anyway.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  12. #72
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    I just want to state again that these parents working with these PT outfits are innocent middlemen. They are just repeating what these PT outfits are telling them. They are not personally vouching for the numbers they are reporting because they can't personally vouch for these numbers.

    That's a good reason to encourage them to get the radiographs and bring them to their surgeon to read. Posting here is not going to produce any official reading. But I suspect side by side before and after radiographs might be enough to inform new parents about whether or not they want to drop thousands of dollars on these treatments.

    Then the discussion of how long the reduction might last if they stop the PT can ensue.
    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. #73
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    Sharon...your PM mail is full again...

    woofs from me and Sparky

  14. #74
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    Sorry I cleared it out. I am getting way more PMs than normal and am not used to this. :-)
    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."

  15. #75
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    I love that your son took it upon himself to search for an alternative solution.

    We recently found out that our daughter had scoliosis. We had didn't have any knowledge about scoliosis. So we went looked for answers. The first doctor said to wear a brace for two years and cross your fingers that it might help. The second doctor recommended surgery. We weren't interested in either of those options. So the research continued. We came across the boot camp. We had a couple of conversations with the doctor in Pennsylvania, Dr. Stitzel. I will say that I did learn a few things through those conversations. So, we were in Pennsylvania within 10 days for the 10 day treatment. When we arrived our daughters curvature was at 33 degrees. After one week of treatment she was at 19 and by the end of the last week, she was 9. She is doing daily rehab at home 1-2 times per day. The home rehab is very easy and only takes 15-20 per session. I can say that I am so thankful that we chose the alternative route. I can see a difference in my daughters stance. I wish you the best in your search!

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