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Thread: Everyone read!

  1. #1
    Join Date
    Sep 2003
    Posts
    42

    Cool Everyone read!

    Hey everyone! I want to hear ur scoliosis story! If u need some cheering up or if u have questions about anything please ask. Thanks! God Bless.... **Hannah**

  2. #2
    Join Date
    Jan 2004
    Posts
    22

    Question

    hi
    i have have a question, why is it that when i take my brace off for like 10 minutes, i feel so unconfortable?
    please answer

    also, whats your story?

  3. #3
    Join Date
    Sep 2003
    Posts
    42

    Hey hey

    Well i have the same problem too! U know how u sit with ur brace on all day? WEll its just hard for ur back to adjust to being able to slouch. Thats my explanation! LOL
    I found out i had scolios in 5th grade at a scoliosis screening. And then i have had it for 2 years. I don't feel like typing everything. I would look in my other threads to find more about my "life" lol. U can e-mail me and i will talk to ya more when i have time. I have lots of homework. BYE my e-mail is cheerbootyshaker@yahoo.com

    THanks so much!!

    -Hannah 13 IN

  4. #4
    Join Date
    Jan 2004
    Location
    new canaan ct
    Posts
    10
    hey, i'm getting my brace, eventhough, my twin kati, doesnt need one(which i hate) my sister is mad becuz i get special treatment, eventhough i dont want it!
    ~Liz Hanson

  5. #5
    Join Date
    Jan 2004
    Location
    California Bay Area
    Posts
    21
    My story goes back a bit... but from what I've read here, all the years haven't changed the process too much.

    I'm 35 now, but was diagnosed with scoliosis by my pediatrian 1979 when I was 11. I had had a excessive growth spurt which caused (they believed then, I'm still not sure) my already prone spine to worsen. All they really know is that it wasn't there and 6 months later it was tweeked.

    I tried physical therapy, a tens unit, walking around with books on myhead to improve my posture, massive amounts of sit-ups, and still it worsened, so the decision was made to put me in a boston brace. I was in the 7th grade by then. In one year I got glasses, braces and a back brace - all my years since then have been a piece of cake :-D

    I wore my brace for 23 hours a day, every day, and was only allowed out of it to exercise or bathe. I spent my summers swimming because it was exercise and got me out of that plastic girdle during the heat of summer.

    I got teased because the upper portion of my brace would stick up when I would lean over. I got teased because the metal braces down the back would rub against the school chairs and make shiney areas on all my clothes. I got teased for pretty much everything - anything that makes you different makes you an easy target in Jr. High and high school. But for as many people as there was teasing me, my inner circle of friends who liked me for who I was, not what I wore, would defend me against the twits who teased. To this day I thank them for looking past the plastic.

    I ended up in Modified PE - even more humiliation. I wasn't handicapped, I had a brace but they didn't know what to do with me. ugh. I hated it then but it taught me an invaluable lesson - I was pretty lucky to have a temporary brace and not what I considered a permanent disability.

    Like you Liz, my sisters back is fine, although my parents obsessed over it until she was done growing. I've never asked her if she felt slighted by the attention that I got, she's never said anything about it. She was only 6 when I was diagnosed so I think it was more of a way of life for her.

    In any case, when I was in high school there were a couple of days a week when I left the house before my mom and got home before her and once or twice I tried going the day without my brace, hiding it in my closet and making sure I had it on when she got home from work. I regretted it both times. My back had never hurt so much as it did those times I ditched it. I went back to wearing it and slowly weaning out of it the 2nd half of my Sr. year. Although, I did get time out for my proms - the doctor gave me the ok, which I'll love her forever for. By the time I graduated, it was gone. We ran it over with my dads truck. :-)

    The early part of wearing it was the worst. Explaining it to people is really difficult to. There wasn't any literature out there when I had mine, but I found a lot of comfort in the Judy Blume book 'Deenie'. Now as I look around I'm thrilled to see forums and books and videos about everything related to scoliosis. There is comfort in numbers and you certainly aren't alone.

    Hang in there...

  6. #6
    Join Date
    Jan 2004
    Posts
    2

    my story

    hey everyone!
    In my science class at school were doing a project on any disease or disorder, so I chose scoliosis seen as I have it. Then I found this web site while I was searching. This is so cool! I wish I had found this while I was wearing my brace. I found out I had scoliosis in 5th during a screening test. I wore a brace during my 7th and 8th grade years. Now I'm in 10th grade. I hated wearing that thing but I am so glad I did and got through it, because i could have ended up with real problems. So my advise to those of you who are wearing a brace right now, wear it! You will be thankful after its all over. You can get through it! luckily I had good friends helping me, I hope you guys have that too. If you need to talk I would love to talk to anyone of you! I'll keep you all in my prayers. Were in this together!
    Luv, Stephanie
    email me (jeepsr4girls87@hotmail.com)

  7. #7
    Join Date
    Jan 2004
    Location
    Maryland
    Posts
    21
    hey!
    I was on the mailing list that existed before this web site and therefore decided to join.
    Here's my story:
    My older sister found out that she had scoliosis at a routine dr's appointment. Because it's somewhat genetic, my dr kept an eye on me. In 6th grade (5 years ago, I'm in 11th now), I went to my dr and he said that I should go to an orthopedist, which I did. From the x-ray, I needed a Charleston brace - worn only at night, and it curves you while you sleep. It was REALLY uncomfortable, especially in the beginning, but then I got somewhat used to it... After half of a year (in 7th grade), at a orthopedist checkup (which I have approx. every 3 months), my curve had slipped, so I needed to get a Boston. For the past 4 years, I have suffered through the pains of wearing a Boston brace for 23 hours a day. I went through approximately 4 or 5 braces, outgrowing them pretty quickly. It was really painful!!!!!!!!!!! especially in breaking in a new brace!!!!! and anyone who is wearing a Boston now, I know how you feel!!!!! Along with the Boston, came a lot of embarrassment, also, when someone would accidentally bump into me and feel, not a regular stomach, but a hard plasic "shield".
    There were plenty of times when I didn't feel like wearing it, and I had almost even decided to have the surgery instead of going through all the pain of the brace. However, my mom won and I kept on wearing the brace.
    About half a year ago, I started getting these big lumps on my side, and when I went into my dr, he said that they were as a result of the brace - that my body was sending extra blood to the site of a trauma. So, he took an x-ray of my hand to see if I had stopped growing (until then, the end of 10th grade, I hadn't... now I'm 5'9 1/2") and said that I could start taking off my brace for first 6 hours, then 12, and then, finally about 3 weeks ago, for 24!!!!!!!!!! It was really exciting to know that all of my years of torture (which it was, at times) were finally over and that they had paid off.
    For anyone who wore the brace and then had to get the surgery, I feel really that you had to go through the brace and then the surgery also. And for anyone who's still wearing the brace, KEEP UP THE GREAT WORK!!!!!!! I know it's hard, believe me, I lived through it. But, in the end, it's really great! And for anyone who's breaking in a new brace, it'll get better once you start getting used to it - it just takes time.

    I know that every single person who has gone through a brace and finished with it says the same thing, but it's really true - it's worth it, despite the pain. (I haven't had the surgery but this is from what I've heard from surgery patients.)

    If you need anything, any advice, whatever - feel free to e-mail me if you don't want to just write it to the site: amzap613@yahoo.com

    AZ

  8. #8
    Join Date
    Sep 2003
    Posts
    42

    HEy

    Ur awesome!!!

  9. #9
    Join Date
    May 2004
    Location
    **Massachusetts**
    Posts
    13
    Ladyliz-

    I know exactly how you feel! My sis does that too! She's jealous b/c i get new clothes but i would give up the clothes to have a perfect spine!
    K*a*y

    Thoraic Lumbar Support Orthosis (TLSO)
    40 degrees thoraic
    30 degrees lumbar

  10. #10
    Join Date
    Jul 2004
    Location
    Minnesoata
    Posts
    40
    When I Take my brace off for ahwile I Feel Guilty why is that???
    Ok here's My story,I Wear a TLSO Brace I'v wore it since I Was 7 and now I Am about 11 and have to wear it till I'm done growing!
    Ciera,

  11. #11
    Join Date
    Nov 2004
    Posts
    29

    My Story

    Hey my story it probably really boring to most but anyway. My my 3-5 grade teacher was teaching us about invertabrates and vertabrates and he was going to eveyone and feeling their spines and when he got done with me he said"Sam your backs a little crooked" i went home and told my mom this and she said that she would bring it up when i went to go see the doctor again. When i had the appointment she checked my back and said i had scoliosis and me being 9 didn't understand what she was talking about and i just thought that it was just a little thing they would keep a eye on and i would grow out of it well 2 years later my parents had heard all these things about people who had scoliosis and didn't do anything about it so the next dorctor's appointment i had my mom wanted me to go to a back specialist so they could tell me that i would grow out of it. when i got to the back specialist he X-rayed me and i had to curves the top one was 38 degrees and the bottom was 48 degree not they consiter surgrey when the curve gets passed 50 so he told me i had to get a brace and all that. But now i'm fine i still have to wait 3 years to get it off for good but if i go to this website i'll feel alot better knowing that there are SO MANY people out there that have scoliosis so its a big comfort knowing i'm not the only one going through all this. Bye ~Sammie~

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