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I think I may need to migrate to the USA!!!

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  • I think I may need to migrate to the USA!!!

    Gee guys,

    I think I'm gunna apply for my green card!!!!!! No joke, I'm so MAAAADDDDD!!!!!!
    I'm in Australia and so annoyed. My 12 year old just got her TLSO Brace today and it might have well have been posted out!!!!
    Not a single sheet of paper handed to us with instructions on how to adjust to life in a brace. No offers of Physio to help with strengthening excercises. No offer of councelling for a young girl just entering teen years and having to deal with this. Just a few words of "oh ease into it over the next 3 weeks and get some x-rays taken in about 6 weeks". This all happened at the Orthotist office. Wait till I see my surgeon. That's when he's back here, he's taken himself off on an overseas holiday!!! My GP knows nothing - quote "that's why i sent you to a specialist, I know nothing about Scoliosis"
    I wanted to tell her "well you dumb xxxxxx, we've been your patients for 8 years now so go find out and help us!!!" Sorry that's a little agressive but nobody wants to know about us.
    Lucky I'm resourceful and can research things on the net and secondly lucky i have you guys.
    Seems like the USA - especially the Shriner's hospital" has some absolutely wonderful programs and support.
    Talk about a backward country - I don't normally knock my beautiful country - (you've gotta see it) but our medical system sure does suck! AND I've got private insurance.

    Okay - breath!!!!! I feel better now that I've typed that out!!!

    My daughter only wore the brace for an hour today and was in a lot of pain, she was sitting there trying her best but I could see the fear written on her face, it was hurting her so much. She took it off and then wore it again for another hour tonight but heaps looser. It just seems to be stabbing into her arms and is really hurting where the pressure pad is. I know it's only day one and she is a real trooper. We'll get there in the end.

    I hate the way it sticks out at the back. She sort of hunches and so there is a gap between the brace and her back - the brace sort of juts out at a 20 degree angle - there is no way to hide that. She has a Thoracic curve, 38 degrees and should really be in a Milwaukee - so maybe that's why it's so high at the back.

    You guys say there is a boston T that can be worn under the brace. Huh!!! We have nothing like that here. I'm going to have to do some serious shopping and search out some gear.

    Okay - this post is getting lllooooonnnngggg and boring for you all, better end it.

    xx
    Del
    Elysia 16 in Feb 2010
    Sydney - Australia
    Feb 2008 Fused T5-L1 and 5 ribs removed.
    Dec 2009 - Crankshafting
    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

  • #2
    AussieMom,

    I am the mom of a 14 y/o girl who was recently diagnosed and we will be getting her brace on Thursday. I have received NO information from the Dr, other than "She'll wear it 16 hours a day, come back in 4 months for x-rays."

    THAT'S IT. Nothing about care, physical therapy (shouldn't she do something to help her body adjust to this?), the side effects a TLSO brace can cause, nothing. I have found more information online that from him, and I got conflicting information from the "Brace man" in regards to how she is to wear this.

    So I can feel your pain!

    I just got off the phone with the case manager, and am hoping the Dr will call me to at least talk to me about some of the questions I have.

    Right now I am trying to figure out where to get a good undershirt for her to wear under the brace...so that is my current mission for the day.

    Anyone know where I could find one of these "Boston T"s?

    J's Mom
    in NC
    J's Mom
    in NC

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    • #3
      My daughter got her brace (Boston brace) when she was 11 years old and we didn't receive any instructions either. I found the web site Spine Kids and this forum for children for her to post to other children. The information I received was also from the internet. My daughter wore the brace for a few hours a day to get use to it for two weeks then she wore it for 18 hours a day. I didn't buy the Boston t-shirts. She wears the t-shirt with the spaghetti straps under the brace.

      Sue

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      • #4
        how is the wearing of the brace going on wriht now , is she getting used to it, i am an orthtist in the netherlands and i am scokked to read they just send you out with no guidance at all , if you have any quistions at all please give me a private message and i will see how i can help you overseas by mail.

        stan

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        • #5
          Del,

          Sorry to hear about what you are going through. Unfortunately, before we found Shriners, we pretty much got the same advice: here's the brace - go home and make him wear it 22 hours a day. Like it was nothing.

          One thing (among many) that I love about Shriners is that they see and treat the whole child, not just the spine. When I brought David in to be evaluated for the stapling they immediately understood about wanting to spare him from years and years of bracing if possible. One doctor even commented about how boys love to plays sports (which he does, especially baseball). They want the kids to have the best childhood possible while at the same time treating the curve.

          In addition to the stapling, for certain curves a nighttime bending brace is used in the U.S. I believe the best results with this brace have been with mild to moderate, single curves.

          I hope you find the answers you are looking for. If I can help answer any questions, please feel free to post them here or e-mail me.

          Best of luck to you and your daughter.
          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/

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