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Thread: Adult scoli patients feelings towards bracing

  1. #1
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    Adult scoli patients feelings towards bracing

    It was suggested that this might be a good stand alone thread. Here are some toss up questions for discussion. Of course you aren't obliged to address these and can suggest some yourself.

    I was interested in how adult patients feel about the issue of bracing.

    If you were braced, do you wish you weren't.

    If you weren't braced, do you wish you were?

    What, if any, lasting psychological effects do you have from being or not being braced?

    Does now knowing there is no convincing evidence bracing works change any of your previous feelings about being braced?

    Does now knowing that some researchers have estimated that about three quarters of kids who are braced are braced needlessly change any of your previous feelings about being braced?

    I'll re-post the answers already posted to these questions if the original authors don't do it themselves.

    Thanks in advance.
    Last edited by Pooka1; 04-04-2011 at 08:39 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."

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    jeneemohler's response

    Pooka, here is my take on wearing my brace-

    I wore my brace from age 15-18 for 23 hours a day. I was only able to take it off at night for a shower and exercises. Trying to sleep SUCKED. (It feels like deja vu right now, with trying to sleep and get comfortable post-op...) I was the shy, brainy type; glasses and braces, the whole geek bit, so it was devastating at first. I was not exactly a hot chick before the brace, now who would want to date a girl in a back brace, too? I found out that the ones who wanted to date me were nice guys, ones who didn't care that I was in a brace. It sure cut through the questions of what a guy really wanted out of me on a date!

    I had a friend talk me into trying out for freshman rally squad. Tryouts were in front of a few teachers, and being a brain, I liked the teachers, so I was able to make my way through it. Barely. We made the squad. It was so out of character for me, but it helped me with my shyness. I actually liked it. I tried out the next year (in front of the whole student body) and made varsity. And here is where it gets aggravating. Right after I made it, I was put into my brace. My rally advisor called my mother and told her that I needed to quit, because I didn't have the "right image" anymore. My overprotective mother was furious. I was feeling down enough as it was- how could she tell me to quit! My mom went to the principal and the advisor backed down. These days, that teacher would have been in a lot of trouble.... So, long story short, I stayed on the squad. I think I was an inspiration for the other girls in braces, showing what a person can overcome. Some of the girls just quit doing everything and were feeling sorry for themselves.

    I also ran track in the spring. I remember bruises, lots of aches, and raw spots from the brace rubbing and putting pressure on me.... (Did anyone else use Ampubalm, a balm to toughen skin for amputees?) But I was determined to keep on living. I guess I may have been shy, but I was showing signs of stubbornness even back then!

    Back to the original question Pooka asked about how it affected me... I think it made me stronger. I learned to accept that sometimes bad things happen and you have to just figure out a way to deal with it. And to look at the bright side, and appreciate the lessons I learned. I became much more active, which I truly believed helped me to postpone surgery for a lot of years. I was strong. I really believe that my scoliosis would have progressed much more rapidly during the teen years if I hadn't have worn the brace. It did during the period that they just monitored me before putting me in the brace. So I started out adulthood with less curvature than I think I would have had. Then I kept active and strong from then on, further postponing it. If I hadn't have worn that brace, I think I would have progressed and had surgery while young, with Harrington rods. Sure glad I waited...
    I also would still be a more introverted person than I am now. I am not shy anymore. I surprise even myself with some of the things I get myself into nowadays! It really brought me "out of my shell". Both the figurative one and the literal one!! I would not wish it on anyone, but I do feel it made me who I am, in a lot of ways. I wasn't going to let scoliosis stop me from doing anything!!!
    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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    Golfnut's response

    Sharon,
    Would you want to start a thread asking about the psychological effects, if any, of wearing a brace during teenage years? I am afraid that many will miss your post otherwise and I would really be interested in reading the replies. I also wonder if many who wore a brace and then later had a fast progressing curve and needed surgery felt that it made little difference in the outcome. I can't imagine wearing one for 7 1/2 years like Stacy Lewis, but she is definitely a fighter on the golf course now. Maybe it makes you who you are in some cases.
    Karen
    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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    foofer's response

    Yes, that would be a good thread....

    and Yes, great story, Jenee'...hope you are still coming along well.

    Another of the many reasons I've appreciated this forum: I was never braced and always wished I had been until I read forum posts, as I had the erroneous impression that it would have taken care of the scoli at an early age. A friend noticed my curvature in a dance class when I was 15ish and it wasn't named until about age 18 by a doc observing a lung x-ray. I felt a bit ruffled that my family wasn't taking my "weird back" claims a little more seriously and now it was too late. I've read so much of the controversy on this forum about bracing- I wish it could be determined that it was effective or not into the adult years. I missed that boat but may not have changed my destiny anyway. I do have to agree with Jenee' that devotion to fitness was helpful in managing this condition. But that is just conjecture on my part- we don't seem to know yet if our curves are pre-ordained or subject to outside influences. I can't wait until we know that one.
    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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    Nitram's response

    As for wearing a brace, I wore one for 2 years and it was AWEFULL...I was already a shy geeky kid and the brace made it even harder and pushed me into a shell that I didn't get out of until my 20's. That was my choice and I could have handled it better, live and learn I guess.

    Rich
    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. #6
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    I wore a brace from age 10 - 13 (6th grade until summer after 9th grade) - milwaukee for the first three years, and then a corset style brace for 9th grade.

    I'm a loudmouth and very social. The brace wasn't a problem for me socially because I am not an approval seeker (my big sister is - and I think a brace would have been very hard for her). If someone made fun of me, my general response, even at that age, was akin to, "what of it? I've got a brace, but you're ugly. At least I'm getting out of this soon. But you, you're stuck with that face."

    Needless to say, in high school I was a cheerleader the year after I got out of the brace (a girl called me a cripple, so I tried out for the team to spite her... and may have dropped her a few times "by accident"... sorry, Michelle Case. NOT!), and went on to become student body president. I won not on the popular/cool kids vote - I won on the nerd/freak/band geek vote.

    I think wearing a brace made me stronger in spirit, more determined to succeed and get what I want despite the odds, and also, it made me more compassionate of others and more approachable because my mouth can make me intimidating to shy people.

    From a physical perspective, yes, I hated it. I hated the milwaukee b/c it pinched my neck. Sleeping wasn't an issue once I put pillows in the right places. I always feared smelling. The corset was so hot, and I remember cleaning it every night with baking soda for the hour I wasn't wearing it so that it wouldn't smell sour. I had back acne from sweating in an undershirt and took tetracycline for years to manage that. However my curves were already approaching 50 at age 9, so I didn't have a lot of choice and believe they would have worsened at a much more rapid rate without the brace.

    Plus it got me out of PE.
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  7. #7
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    Wow -- love this thread...

    Sharon, thanks for starting this thread.

    Everyone, these stories mean a lot to me and if there are any others out there, I would love to hear them. We are faced with decisions on our 9 year old daughter right now - brace at night, brace full time or even possibly VBS - and hearing the different stories certainly helps me gain perspective.

    Thank you all for sharing!

  8. #8
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    Quote Originally Posted by texfinn View Post
    Sharon, thanks for starting this thread.

    Everyone, these stories mean a lot to me and if there are any others out there, I would love to hear them. We are faced with decisions on our 9 year old daughter right now - brace at night, brace full time or even possibly VBS - and hearing the different stories certainly helps me gain perspective.

    Thank you all for sharing!
    I have felt for a long time that these testimonials from adults who dealt (or didn't deal with) bracing would be quite valuable to parents dealing with this issue now.

    I specifically want first-person accounts. Thus I would like to avoid parents "speaking" for kids in this thread as in the one post because while certain parents think they know what their kid feels, they may not. I would appreciate it if that post was voluntarily deleted as being off topic.
    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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    Quote Originally Posted by Lilysaidwhat View Post
    If someone made fun of me, my general response, even at that age, was akin to, "what of it? I've got a brace, but you're ugly. At least I'm getting out of this soon. But you, you're stuck with that face."


    LOL, that's hilarious!
    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
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  10. #10
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    Just to add on here - now that I have had to go through surgery as an adult, I truly believe I and my parents made the best decisions we could have throughout this entire ordeal.

    The surgeons offered surgery (of course), and my folks decided against it - this was 1980, and at that point it was all Harrington rods, 6 months out of school, yada yada - my parents didn't want to put me through that. I am glad that we went with the brace, and for the record, I had some - but manageable - pain through my 20s and early 30s. It's only in the last two years that my lifestyle has changed to include a brutal commute, brutal career, a lot of stress and walking, etc. and my pain started to get out of control.

    I would not have gotten surgery earlier(like in my 20s) under my own choice as an adult, and I think the brace was the best thing for me. Granted as we all know, we are all different here - but I believe I waited it out as long as I could, and that doing it now was the best choice *for me*.



    ETA - Elisa, when we finally moved to the NYC area, I realized I was among "my people" for the first time ever. LOL!
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  11. #11
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    Since this thread is apparently being used as a means to help potential bracers make a decision regarding their treatment plan, the following must be pointed out.

    Most successful adult ex-bracers are out and about living their lives and would not be on this forum unless they were having problems, looking into surgery, or had kids with scoli (which might possibly indicate a more tenacious form of familial scoliosis). Therefore, those who stumble on this thread for insight in their bracing/not bracing decision, this would not be a representative sample of those who have worn a brace. In fact, you are getting the review of those who could be considered disappointed bracers, no matter how interesting and courageous their stories are.

    And also, please note that those who did not wear a brace and just think how awful it would be are not valid indicators either.

    And last, but not least, bracing has changed a lot in the decades since adult bracers have worn braces, and braces are typically less noticeable, less cumbersome, and there are alternative choices such as night bracing.

    There is no doubt bracing is not easy, you must keep actively monitoring the brace and its fit during growth and weight gain or loss, but unlike those in wheelchairs, people in braces eventually get out of them. Many with good results.

  12. #12
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    Quote Originally Posted by Ballet Mom View Post
    .
    OFF TOPIC. Please delete
    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 hdugger View Post
    .
    OFF TOPIC. Please delete
    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. #14
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    Quote Originally Posted by Lilysaidwhat View Post
    If someone made fun of me, my general response, even at that age, was akin to, "what of it? I've got a brace, but you're ugly. At least I'm getting out of this soon. But you, you're stuck with that face."
    OK, Elisa took the words right out of my mouth - that is HYSTERICAL (and something that would make me very proud as a mom to hear my kid say!)

    I noticed you mentioned NYC, which happens to be where I'm from - that explains your spunk :-)

    P.S. Great thread, Sharon - thanks for starting it!
    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/

  15. #15
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    Hello,
    I had surgery in 1980 where they put a harriington rod in. I never was given the opportunity to wear a brace because my scoliosis wasn't found until it was 47 degrees. I remember being glad at the time because I didn't want to wear a brace that people could see - I was only 15. But, I wish now that my scoliosis would have been diagnosed earlier so that I could have worn a brace. I just think it would have been better to try to avoid surgery, if possible.

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