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Thread: Adult scoli patients feelings towards bracing

  1. #31
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    Quote Originally Posted by JavaLover View Post
    My mom took me to an orthopedist who told us that my curve was too advanced for bracing but that it was not big enough for surgery (but that if left untreated, it could be fatal).
    The grey zone is like other watch and wait. If surgeons have not idea what to do with scoliosis except fusion, instead of say to wait for it, they should to provide patients a list of all non-surgery methods and fisionless surgeries and leave them to decide what to do.

  2. #32
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    Thumbs up

    Quote Originally Posted by titaniumed View Post
    I might be off topic just a tad BUT, exceptions can be made.....

    Karen,

    I didnít realize that you were a patient of Dr Cobb....I found an article that has a picture of him, down at figure 12.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821498/

    Do you have any pictures from those days???? I think they would be neat to see...
    Ed
    Ed, Thanks for that link! I also knew Philip Wilson(Jr. and Sr.). I have a photo of myself in a turnbckle jacket. I looked like a turtle encased in plaster.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  3. #33
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    May 2008
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    Karen
    I thought you would like that. Even though this thread is about bracing, the old casting methods used years ago deserve some discussion....I guess you could call casting the most extreme form of bracing. I was lucky that I dodged that bullet.

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #34
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    Mar 2009
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    190

    Wore a Boston brace

    Quote Originally Posted by titaniumed View Post
    Nobody had anything that was guaranteed, and basically, scoliosis treatment has been a trial and error thing for many years....
    Starting with this quote by Ed, because it's a very good viewpoint. My pain was missed in diagnosis as an adult for 8 years as my curve was drastically worsening, because being braced as a kid, I was told I wouldn't have to worry later after my bones fused. We all know that to not be the case now. Many lawsuits started in my head... including the Dr. who at the beginning of that 8 years told me they don't measure curves anymore, after I went and got an xray. I won't get started. The point is nothing would have been guaranteed. But I do wish I'd begun treating it earlier in my adulthood with stabilizing muscle work..... OK back to the brace:

    I wore a Boston brace in 1979. I was supposed to keep it on another year but it hurt so much that after 9th grade I kicked it under my bed and that's where it stayed. It left scars where it would rub when I coughed or sneezed; sitting in class was especially painful. I survived, I guess with my strong but easygoing spirit as well as having another girl in gym class with the same brace. But I would space out a lot from the pain, and missed a lot of American history. I was the kind who kept things inside. Yes, glasses, braces, night guard... my PT said I was all put together with wires and screws.

    The brace got the curve down from 34 to around 22 lumbar, but as I indicated, it's come back in my adulthood and now stands at 50 lumbar (thoracic less so at 28 currently).

    The most embarrasing moment was when I was running bases in gym class and it popped open, and my elastic shorts got as wide as they'd go-- I carted it home in a paper bag after my mother came and rescued me. My dad used to call it my turtle, some humor helped.... sleeping was ok; I was only out of it 1 hour a day for bathing.

    As of today I am very glad I was in it; feeling we did all we could at the time. Surgery was posed as an option but I didn't want to be out of school for a year in a body cast. Socially, my mother took me shopping for pretty clothes that hid the brace well, so only my best friend knew, really. I had plenty of friends and was involved in theatre arts, and was also pretty active- ice skating, rollerskating, etc.
    Last edited by dailystrength; 08-23-2011 at 10:32 AM.
    34L at diagnosis; Boston Brace 1979
    Current: 50L, 28T

  5. #35
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    Quote Originally Posted by titaniumed View Post

    Bracing is like wearing a band aid. They work to a certain extent when they are worn, fall off easily(especially in school), and are mostly uncomfortable. Band aids are not necessary for a cut, but they help. I think that bracing is worth a try....it is worth some effort.

    Ed
    I agree, Ed.

    I wore a Milwaukee brace for 2 years from age 10 thru 12 in the early 70's. It was so uncomfortable to wear...the rashes, sores, pinching was terrible. That old fashioned brace was heavy, too, with all the leather, padding, and metal. I think back sometimes and it really seems like it was all just a bad dream...

    Then there was the psychological impact, which was the worst. The teasing was unimaginable. My best friend even nicknamed me "hunchy." Kids would come up behind me and grab the bars and shake me. I felt like a freak. This was in elementary school! I was always a happy, fun-loving girl until this time in my life.

    So after 2 years of this torture, I told my mom that there was NO WAY that I would wear it to middle school. My curve had improved during those 2 years of wearing it, however. I remember seeing the x-ray in the orthopedist's office and seeing that my spine was almost straight and how shocked he was! I was a good patient, though. I did all my exercises and wore that sucker like I was supposed to. But the constant harrassment and ridicule was just too much.

    My curve continued to progress after that, slowly, until my 40's when it was getting worse, the deformity was affecting my quality of life, and the pain was increasing.

    The braces now are more easily concealed and I wish we had that style back then.
    Laurie
    Age 57
    Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
    Thoracic curve corrected from 61* to 16*
    Lumbar curve, unknown measurement
    Disfiguring back hump GONE!!
    Dr Munish Gupta
    UC Davis Medical Center, Sacramento, CA

  6. #36
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    Quote Originally Posted by Pooka1 View Post
    What, if any, lasting psychological effects do you have from being or not being braced?
    I think that the psychological effects are mostly about scoliosis and bracing just adds to it. Its secondary. We worry about what will happen to us.....thatís the main focus. Wondering about possibly needing surgery in the future as a child, can really knock you for a loop. Scoli kids need support!

    I was fortunate that I didnít brace as a child. I braced as an adult and there is a big difference.
    If I ever caught a kid mocking or physically abusing another kid in a brace, I would probably blow a fuse.
    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #37
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    NC
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    Quote Originally Posted by titaniumed View Post
    I think that the psychological effects are mostly about scoliosis and bracing just adds to it. Its secondary. We worry about what will happen to us.....thatís the main focus. Wondering about possibly needing surgery in the future as a child, can really knock you for a loop. Scoli kids need support!

    I was fortunate that I didnít brace as a child. I braced as an adult and there is a big difference.
    If I ever caught a kid mocking or physically abusing another kid in a brace, I would probably blow a fuse.
    Ed
    Thanks for that perspective, Ti Ed. I have long known that there is plenty that I can never know just from being a parent and not a patient. That's why this forum is so valuable to me... hearing from adults were were patients as kids.

    I think the bracing situation as it stands is very sad. I think parents are doing their best but are not aware of the evidence case. I think surgeons are hoping it works and so continue to try but admit they have no good evidence. That said, I suspect many parents out there would brace their kid even with a 1% or 0.1% chance of avoiding surgery. It's just all so sad.
    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. #38
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    Mar 2009
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    Quote Originally Posted by titaniumed View Post
    If I ever caught a kid mocking or physically abusing another kid in a brace, I would probably blow a fuse.
    Ed
    Ed, I wish you were there at my school back then! I could've used that support!
    Laurie
    Age 57
    Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
    Thoracic curve corrected from 61* to 16*
    Lumbar curve, unknown measurement
    Disfiguring back hump GONE!!
    Dr Munish Gupta
    UC Davis Medical Center, Sacramento, CA

  9. #39
    Kayde Guest

    Brace

    I was 14 when I was told I had scoliosis. I remember the doctors telling me what a horrible life I would have. People calling the house telling my parents what was best for me. The doctors had other children call me to tell me how sugery or the brace would better my life. In the 70's the braces were horrible. They immediately fitted me and we went to pick it up. I had told my parents I would never wear it. The odds of me wearing it 23 hours a day for 5 years with a 50/50 chance of correction and then 50/50 chance of staying that way didn't seem like good odds to me. My chin would have been in a metal cup and in the summer the would drill holes in it for me. My mother told me it would make my figure look better and we could do things to hide it didnt exactly sit well. Needless to say it never came out of the plastic bag. I will be 46 next month and I had 2 children and danced and played golf and never progressed until 2 years ago when my hormones got too low from a hysterectomy when I was 28 so I developed osteopersis and I went from a stable 53 to 73 in 2 years. I can say I don't regret my decision not to wear the brace. I have a much better brace now that I wear a couple hours a day to help keep it stable. I am scheduled for surgery next month only because of the progression and the hip and leg pain I have developed The worst for me is when people want to adjust my clothes thinking my dress is on crooked and I have to tell them it's me not the dress. I think the emotional trauma of everyone trying to force me into something and telling my parents they were bad parents for not forcing me to wear it is far worse. There are so many options now but still if your girls aren't ok with it the emotional issues are hard to predict. It is hard when they are so young. My son has scoliosis my daughter does not. My son chose to only have chiropractic care. He knows he will have to have surgery but he says he doestnt regret not wearing a brace or having surgery. His curves are worse than mine and he is 26

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