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Thread: Surfing for Scoliosis: The Quality of Information Online: Discussion

  1. #1
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    Surfing for Scoliosis: The Quality of Information Online: Discussion

    http://www.medscape.com/viewarticle/519357_4

    The Internet has permitted physicians, other healthcare professionals, patients, and other consumers to quickly access medical information in unprecedented volume. Such access has the potential to speed the transformation of the patient-physician relationship from that of physician authority ministering advice and to that of shared decision-making between patient and physician. However, several substantial barriers remain before this relationship can be realized. These barriers include equitable access to information, imbalance between patient health literacy and the information provided,[20] extreme variability in the quality of the content, potential for commercial interests to influence content, and uncertain preservation of personal privacy. The Federal Trade Commission and the U.S. Science Panel on Interactive Health Communication have warned that much of the information on the Web is misleading and can be harmful to consumers.[21]
    Emphasis added.
    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. #2
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    ain't that the truth

    one of the most frustrating things ive had to go through in trying to decide to have this surgery is trying to weed out all the crazy/crap information out there. first and foremost is to listen to your dr. however, it is nice to hear from other patients or people who have had to deal with the medical problem you are facing. I can't tell you how many clear crap, dr. schnitzel or whatever his name stuff, or people saying that i'd be permanently disable stuff i've had to look at that scared me to no end. for everything like that i go to my dr. and ask more questions only to be patiently reminded of their trained medical opinion.

    as a test, i tried to google 'appendectomy' (since i went through an emergency one many years ago and i know how that is) to see what information is out there about it. i've never seen such craziness in my life.

    aaah the internet
    30 y.o female, very active, considering surgery
    08/03/11 - 54 degrees
    06/2004 - 33 degrees
    Don't like hospitals

  3. #3
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    Quote Originally Posted by patty22 View Post
    one of the most frustrating things ive had to go through in trying to decide to have this surgery is trying to weed out all the crazy/crap information out there. first and foremost is to listen to your dr. however, it is nice to hear from other patients or people who have had to deal with the medical problem you are facing. I can't tell you how many clear crap, dr. schnitzel or whatever his name stuff, or people saying that i'd be permanently disable stuff i've had to look at that scared me to no end. for everything like that i go to my dr. and ask more questions only to be patiently reminded of their trained medical opinion.

    as a test, i tried to google 'appendectomy' (since i went through an emergency one many years ago and i know how that is) to see what information is out there about it. i've never seen such craziness in my life.

    aaah the internet
    LOL on the Dr. "Schnitzel"!!!! Wow I needed that laugh right now. :-)

    Those Clear chiros need to stop talking about surgery as they CLEARLY don't have a damn clue what is what. Unfortunately, they will always have a very scared group of people out there who don't understand there is no evidence for chiro helping with anything but pain.

    It's a jungle out there and not enough folks to protect the bunnies.
    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."

  4. #4
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    Hey Pooka and Patty,
    I'm all for the right information too. I agree with what you both said.
    I actually also own http://www.scoliosisnonsurgical.com/ as well, to add to my group of sites,
    - so at some point we can pull them all into line if you think thats what needs to be done.
    Hell - I don't need convincing, I was gonna do it anyway.

    I've actually got fixscoliosis listed on my scoliosisforums.com site.
    I'm not actually sure what to do about websites like this, whether or not they should be listed.
    At the moment though I'm giving every site the benefit of the doubt, however I would like to discuss the matter more.
    Some sort of quality standard for which sites should and should not be listed on my websites.
    Its a matter of conscience that I must ensure I provide the right info or at least place such info in the right context.
    Anyhow if anyone has any input, feel free

    (I had a laugh too, thanks Patty)
    - Scott

  5. #5
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    Quote Originally Posted by Pooka1 View Post
    Well said, Sharon.

    The phrase that caught my eye, in particular, was:

    "potential for commercial interests to influence content"
    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/

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  6. #6
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    Quote Originally Posted by mariaf View Post
    Well said, Sharon.

    The phrase that caught my eye, in particular, was:

    "potential for commercial interests to influence content"
    Yes it is impossible to underestimate that problem. It is no wonder the literature is a train wreck. I include the entire literature, not just certain treatment modalities, to the extent it is tainted by non-science interests. Couple that with all the other problems (chiros preying on surgery fears, health and medicine illiteracy among the populace, etc. etc.) it is almost impossible to figure it out.
    Last edited by Pooka1; 12-12-2011 at 10:44 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."

  7. #7
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    There is so much crap out there about scoliosis and a lot of it is aimed at people who are desperate to help themselves or a loved one. I began my search a year ago and some of the scare tactics brought me to tears. My son's case was very severe and I was looking for real direction and at first I got a bunch of sales pitches and 'cures' that cost lots of loonies which I did not have. Finally, I found this forum, started a thread and wouldn't you know it, on page one, a chiro chimes in trying to sell me on CLEAR. I was actually okay with that but was not okay with the chiro pretending to NOT be a chiro and acting as though she was just an ordinary gal giving me some good advice bc she "heard good things about CLEAR and that I should try it" for my son. What? At least if you've got something to sell, don't pretend to be someone else. Wow, what a way to discredit the very thing you're pushing. I'm just glad I wasn't born yesterday and had some good people here to jump in and direct me elsewhere.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  8. #8
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    Truth is stranger than fiction. :-)

    It is a shame that those most needing the ability to separate the wheat from the chaff are least able to do it because of the sheer volume of material of which only some percentage is accurate.
    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. #9
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    It is also good there's people here (and other reputable forums) that are actually here for the good of others and not to promote themselves. I was impressed that it took about a nano second for someone to jump in and 'clear' things up. :-D
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  10. #10
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    Quote Originally Posted by Elisa View Post
    It is also good there's people here (and other reputable forums) that are actually here for the good of others and not to promote themselves. I was impressed that it took about a nano second for someone to jump in and 'clear' things up. :-D
    Well, that case, on a scale of 1 to 10 in terms of difficulty of clearing up, gets a score of -34,988.

    Actually, not a lot of alternative treatment types venture onto this forum as far as I can tell. It was unusual and unfortunate that that happened to you in my opinion.
    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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    Yes, of course it would only happen to me 'cause I'm 'special'. LOL
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  12. #12
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    Quote Originally Posted by Elisa View Post
    Yes, of course it would only happen to me 'cause I'm 'special'. LOL
    Yes you are. Anyone with 7 rescue chinny-puffs is special in my book. You are part of the solution, not the problem. :-)

    Hey, check out this cat that inherited 10 million Euros...

    http://icanhascheezburger.com/2011/1...t-italian-cat/
    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. #13
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    Quote Originally Posted by Pooka1 View Post
    Yes you are. Anyone with 7 rescue chinny-puffs is special in my book. You are part of the solution, not the problem. :-)

    Hey, check out this cat that inherited 10 million Euros...

    http://icanhascheezburger.com/2011/1...t-italian-cat/
    I saw that on TV last night. Crazy. Not the most money left to a pet though b/c the show also said that a few years ago a dog was left something like $40 million. I'm sure the money will all be divided amongst people but it's still bizarre how people leave everything to their pet(s)

    Speaking of pets, chinchillas in particular, I'm not leaving nothin' to Rupert. He is a total shit disturber every night in the chin room and he spends all of his time trying harassing all the other boys and then they start thumping around their cage and go nuts on their wheels. Drives me nuts. He'd definitely be first on my adopt-out list.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  14. #14
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    Well, maybe he needs to be neutered. Or neutered again as I considered doing for one of my boy pigs. :-)
    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. #15
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    No, neutering chinchillas is not a good idea; they're very small and delicate and don't really do well under anesthetic. It's also expensive b/c they're exotics. It wouldn't make a difference anyway, apparently. I'm still trying to figure him out b/c he's a little terror compared to my 'relaxed' guys. He might do better in a home where he's the only chinchilla. I want what's best for all the fuzzy ones around here. I'll battle the imp tomorrow.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

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