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Thread: Adult scoli patients feelings towards bracing

  1. #16
    Join Date
    Jan 2008
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    NC
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    I just want to again thank the people who contributed first person accounts of bracing or not being braced.

    They stand alone and should not be "analyzed" but just accepted as true accounts. As a parent of two kids with scoliosis, these testimonials hold the potential to give me insight into how my daughters feel now and in the out years, a perspective I had no hope of gaining otherwise.

    I ask AGAIN that Hdugger and Ballet Mom remove their OFF TOPIC posts out of just plain common decency.
    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. #17
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    May 2008
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    reno,nevada
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    Guess I should post for the record.

    Back in 1975, the Docs really didnít know what to do, and I was not braced. They did not seem confident in bracing me, nor did they feel that exercises were going to accomplish too much....those really were the Ēthe dark agesĒ.

    15 years later in 1990, I was an early Copes patient. I figured that I needed something to try to control my pain. His brace was made well, however it was extremely hot. It did work well in controlling my back pain however, the ergonomics of wearing a full wrap around brace were not easy to get used to. I felt like I was wearing full football gear, and ready to rumble.....No correction was guaranteed in my thoracic, and some was expected in my lumbar, which did happen eventually, but the curve correction never held. Electrostim, didnít work on my scoliotic muscles and spine. For some reason, those muscles would not build up. If I used the stim on my arms, I would have had huge arms.

    As an adult(32) wearing this thing, I really didnít care what others thought, and it didnít matter. It was solely purchased for pain control while waiting for my surgeries some day. After a while I would only wear it when I needed that extra support. I also skied in it often.

    I still have it in my closet. It doesnít even come close to fitting anymore, it must have shrunk somehow? LOL
    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

  3. #18
    Join Date
    Mar 2005
    Location
    east coast
    Posts
    359
    I wish I had been braced.

    I got diagnosed with scoliosis at 12, 25 degrees measured by a chiro. No 2nd measurement, I donít remember if I didnít have a compensatory curve back than or not. He Ďtreatedí me for a year, took an xray at that time, and did not show my mother and I the xray. Claimed it had Ďgone downí to 24 degrees. Bull ****. I bet it had increased a lot by than. >:O. I was so glad to find out the guy is no longer practicing and apparently doing stand up comedy.

    My primary care doctor for reasons I will never understand never referred me out to an orthopedist. That still angers me to this day.

    Given all the above, my curve probably would not have responded or even slowed progressing with a brace. The major curve is a lower left thoracic curve with two wedged vertebrae. But the reality is, I just never had the option of trying the brace. I might have smaller curve, or at least, smaller rib hump.

    Been having lots of pain in my left shoulder lately, and I think itís due to the rib hump forcing the scapula out of normal position, which puts the humeral out of wack, and combined with my hypermobile ligaments/tendons... I guess Iíve gone some threshold for my shoulder and it just canít compensate anymore.

    So yeah, I totally wish I had been braced.
    30 something y.o.

    2003 - T45, L???
    2005 - T50, L31
    bunch of measurements between...

    2011 - T60, L32
    2013 - T68, L?

    Posterior Fusion Sept 2014 -- T3 - L3
    Post - op curve ~35



  4. #19
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    May 2008
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    reno,nevada
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    My primary care doctor for reasons I will never understand never referred me out to an orthopedist. That still angers me to this day.

    I also had this happen to me back in the 60s, and yes, It bothered me for a long time but realized that being mad about this just isnít worth it.

    Nobody had anything that was guaranteed, and basically, scoliosis treatment has been a trial and error thing for many years....

    I think its better to be happy that technology has advanced some. Itís a good thing.(Iím looking at 50 years)

    Another good idea for a thread would be to address the psychological effects of just having scoliosis....or psychological effects of knowing some day that you will need a serious scoliosis surgery or surgeries.

    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.

    They also give us hope...

    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

  5. #20
    Join Date
    Feb 2009
    Posts
    25
    I was diagnosed at 13 and was fitted for a brace immediately. I was already horribly self-conscious and couldn't imagine wearing it. It was a hard plastic shell that velcroed in the back, started right under my chest, went under an armpit on one side, down to my hips and covered most of my butt. When I sat in it it would be forced up so it never fit quite right and no one did anything about it. I refused to wear it and it stayed hidden under my bed for about 3 years. At 16 the doctor told me I could stop wearing the brace and if I wanted to, I could have surgery. Really!? What 16 year old girl is going to choose to have surgery?

    It was a bad part of my teenage years. I would try to wear it at night but could not ever get used to it, it was extremely uncomfortable. Definitely not a good memory.

  6. #21
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    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    I realise now that my GP back in the early sixties in New Zealand was pretty ignorant about Scoliosis. I wasn't referred to a specialist. I was 13 and refused to have the surgery (thank goodness) that was then available. I wasn't offered a brace. I also think our ignorance made me pretty lucky. My GP said the surgery was pretty horrific and perhaps we should just wait and see. From then on, my family and I ignored my scoliosis - meaning it was never mentioned again and I completely forgot I had it and I don't think any of this had a detrimental effect on my outcome. It wasn't until I was in my 50s and my parents had died, that I realised "this thing" was getting worse and starting to have a bearing on my life.

    I have a strong suspicion now from my reading, that a brace wouldn't have helped and I'm just so glad I escaped the surgery that was then available.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  7. #22
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    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    i wore a Milwaukee brace 23 hrs a day from 1979 to 1982, age 13 to 16, then night time only for a year.

    initially during that time there was plenty of tears and heartache. i had been athletic and was told i could no longer participate in cheerleading or ballet. i'm not sure what i did then to fill my time aside from school. my grades dropped, i went from a straight A student to Bs and Cs and then to almost going to summer school my freshman yr in HS. somehow, though, i pulled through. i got into photography in HS since i wasn't allowed (by the doctors) to participate in sports. i also sat out of PE during my years in brace, i think... i really blocked a lot of it out. actually, i thought i had only worn my brace for 2 yrs until i retrieved my records from Shriners last yr when my daughter was diagnosed.

    i am glad that i was braced, in hind sight, because my curve had increased from 30 to 35 degrees in the time period prior to becoming a shriner's patient. bracing was initiated when my curves were about 35 and 35 degrees. was discharged from care at shriners at age 20 with curves of about 26 and 24. was told the were stable and unlikely to progress but that i should follow up annually with an orthopedic surgeon. i never did. i buried scoliosis so deep. i never wanted to think about it again. my parents and i never discussed it once i no longer had to wear the brace.

    when i had kids, i always kept a look out on their backs, always relieved to see their straight spines. imagine my devistation when my 8 yr old was diagnosed last year at her well visit. it brought back a flood of emotions for me. i delved back into scoliosis with an interest i had never had before, was relieved to learn of all the improvements despite all of the unknowns that remain. got her to the best specialists i could find. initially was very resistant to bracing her. seriously considered spinecor because it was not a hard brace. ultimately went with a TLSO as recommended by our specialist and she has shown improvement steadily over the past 8 months.

    her life in brace is very different than mine was. her brace is hidden under her clothes. strangers do not stare at her. she is encouraged to have time out of brace daily to participate in sports and dance and keep her core strong and limber. it is tough but she is thriving.

    one more interesting thought, as i reached out to friends during the last year, my best friends from college never knew that I had Scoli. i left it behind in HS, never to be discussed. until now, i am owning it. btw, my curves have increased a bit but do not affect my day to day life. i've never had surgery.
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  8. #23
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    Jun 2011
    Posts
    58
    Quote Originally Posted by Pooka1 View Post
    jeneemohler's response
    Pooka, here is my take on wearing my brace-

    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!!!
    Wow. I had just the opposite experience. My scoliosis (and kyphosis) was discovered at 13. And I wasn't braced. So I started out adulthood with more curvature than I think I would have had. Meaning my conditions would have been slowed down and i wouldn't be as crooked, round-shouldered, etc., as I am if i had been braced during my teen growing years. It really put me INTO MY SHELL. It resulted in destroying my self-esteem making me very introverted, extremely self-conscious, and put me into a shell that I have never come out of. From being teased, to comments to this day that "hey you're walking funny" to "hey you're sitting funny" and some comments much worse and so on that have turned me into the person I am today. Someone who is always self-conscious, waiting for the next cruel or insensitive comment, and very lonely. I cried when I read your response because my experience is so opposite, I see all I haven't done because it so destroyed my growth as social person. And I'm often angry that I wasn't braced. I so wish I had been braced, to think how I went thru my teens, those growing years, and nothing was done to slow its progression, even if it would have been just a few degrees.

    I'm glad your situation turned out for the better. I'm just amazed how I had such the opposite from not being braced.
    Last edited by so_shy; 07-09-2011 at 05:36 AM.

  9. #24
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    Jul 2009
    Posts
    1
    I started wearing a Milwaukee brace at the end of my 4th grade school year. My school nurse explained to the classrooms why I would be wearing a brace. I think this helped extremely well for my social outcome. No one every made fun of me for it or bothered me, it actually made my school mates more curious. Everyday before gym class I woud run to the nurses office, take my brace off and participate in gym, then I would run back and put it back on. I became an expert at taking it on and off by myself. I also never gave my parents any trouble about wearing it. Although I had no trouble wearing it to school for 1 1/2 years, I refused to wear it to middle school. I knew that it would be difficult wearing the brace with kids I didn't know and didn't understand why I was wearing a brace that came all the way up to my neck. Overall I am glad I wore it for about 2 years. I never gave my parents any trouble about wearing it.

  10. #25
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    Sep 2003
    Location
    NJ
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    In 1954 we asked for a brace - Am I off topic?

    Back in 1975, the Docs really didn’t know what to do, and I was not braced. They did not seem confident in bracing me, nor did they feel that exercises were going to accomplish too much....those really were the ”the dark ages”. 04-07-2011, 05:01 PMtitaniumed
    I was a patient of the famous Dr. John Cobb of "Cobb angle" fame at the Hospital for Special Surgery.
    Surgery at that time was "last resort" because of the dangers. We requested bracing but he advised us it "wouldn't work" for me nor would exercises. He was one of the most experienced scoliosis doc at the time. We had to wait until I reached skeletal maturity for the curves to stop progressing indicated by ridges forming on my iliac crests and menarche. The rest is history. Two years later: 100degrees.
    Now I doubt it would have worked because the adults in my family have progressively curving spines--- Scolioscore(?)
    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

  11. #26
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    Mar 2010
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    2,004
    What should to be considered is if a brace is useful or not. I think that in most cases is not used in the right way, that is, stretching the spine before, but anyway, nobody should to expect that must to be effective on its own. Maybe brace is a necessary condition for a effective method but not sufficient. Concepts of logic and Problem Solving should to be taken in mind by anyone trying to achive a satisfactory solution to something so complex as scoliosis is.

  12. #27
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    Jun 2011
    Posts
    2

    braced, poorly, results questionable

    First post, here goes: I have double curve, lumbar worse, numbers are for the lumbar curve (also pectus excavatum). I was diagnosed at ~10 deg, braced at ~25 deg, stopped at age 18 (in 1996) with 39 deg curve. Did it "work"? I don't know and neither does anyone else. There was not a parallel 'me' that was not braced as a control. I am 33 now, and seeing a specialist soon (for the first time since I was 18) due to increasing pain and its negative affect on essentially all aspects of my life. Exercise and medication have lessened the pain substantially, and I'm planning to lay that all out at some point. But anyway, the bracing story:

    I believe it was a front-velcro Boston brace that was intended solely to correct the worse of the two curves. I was told only to wear it at night, which for an active teenage me meant at most 6 hrs, 6 days/week (yes poor compliance is complicit here, I admit it), and I have not heard of anyone else that wore one solely at night the entire bracing period. Sometimes I'd wake up at 3am in much discomfort and take the thing off in a somewhat delirious state. However, I also had the same brace while growing 4 inches and gaining 40 lbs, which is certainly not what any decent practitioner would do now. That sucker was uncomfortable, hot, and I slept very poorly. I believe this led to, or at least exacerbated, a number of personal issues in school, as well as crazy chest/back acne. Sleep deprivation is a form of torture after all. I simply would not have worn it in school anyway, had enough social and self-esteem issues already, but was also very active in athletics and would not have given them up.

    I am concerned that my curve is progressing and so am seeing a specialist. It is possible the last x-ray was on a 'good day' and showed a bit less than on an average day (as most know now that measurement error is about +/- 5 deg on any given day). Whatever the outcome I detested the brace. I'm still not certain personally that it was either a good or bad idea and am hoping current ongoing studies will resolve the issue for future patients. (also interested in J+J's new genetic test for likelihood of a progressing curve...)

    Side note: I find Ballet Mom's comment to be appropriate and don't believe it should be deleted from the thread.

    Finally, if you are reading this in Maine north of Augusta, contact me and I'll let you know more detail of my opinion of the sole SRS-listed practitioner in the area... and please go get a second opinion! that pretty much goes for everybody I suppose.

  13. #28
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    May 2008
    Location
    reno,nevada
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    3,974
    I might be off topic just a tad BUT, exceptions can be made.....

    Karen,

    I didn’t 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
    Last edited by titaniumed; 07-18-2011 at 09:36 PM.
    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

  14. #29
    Join Date
    Jul 2011
    Posts
    5
    I was not braced. A neighbor of mine noticed my scoli at the age of 12 when she told my mother that my shoulders looked uneven. 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 scoli specialist was on vacation, and we were supposed to get a call from the hospital when he returned for a consultation with him. The hospital never called, and my mother never followed up (the ortho's grim prognosis paralyzed her so she chose to pretend nothing was wrong with me).
    For a very long time, I hated my mother for not catching my condition in time for the brace. Then I hated her for not following up with the specialist (my curve was in the low 20s so I think a brace would've been ok). But knowing that a brace probably wouldn't have worked anyway has brought me some peace with my mother. If I wore the brace, my childhood and teenage years may have been sad and lonely. For those years, I still felt "normal" despite the scoli.
    However, at the same time, knowing that bracing might not be necessary scares me because I plan to have a child of my own some day. If I pass this down to my kid, I won't know what the right thing is to do.

  15. #30
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    Jun 2011
    Location
    Indiana
    Posts
    68
    It's definitely hard at times wearing a brace, and it's even harder to find out that you still need surgery. After wearing a brace from 5th grade to 11th grade, I found out that I was a "brace failure".

    As I went through it and as I look back, I'm so glad I wore the brace. Yes, life would've been easier if I hadn't, but if anything, it's made me stronger. It was a test of obedience to my parents, determination, responsibility, etc.

    I struggled at times with being thankful and just wearing it, but I had great support from friends. Going to a Christian school was absolutely wonderful. My friends and classmates were so supportive ever since I first got the brace, because they knew that God had allowed me to go through this. They never made fun of me because of it. We would joke about it and have fun with it at times, but they always waited for me to start it. : ) I strongly believe that attitude and perspective has a LOT to do with your experience with bracing.

    In about 8th grade, my friend was diagnosed with scoliosis, and her curves were actually worse than mine at the time. She was put in a brace, and over the next few years, her curves decreased and now has no more problems. I just heard from another girl from my school who is done with the brace with lower curves and doing great.

    In the long run, when considering bracing and surgery, having been through both, I firmly believe that bracing is worth the try. It may work, and it may not. But surgery isn't a piece of cake, either. If I had a child with scoliosis, I would do everything I could to prevent surgery, even if it meant bracing.
    Katie

    My blog: http://scoliosis-braceyourself.blogspot.com/
    My video: http://www.youtube.com/watch?v=8NG9hMohsU0

    5 Boston back braces
    Spinal fusion- Nov. 17, 2009, senior year of high school
    52 and 57 degrees pre-surgery, 22 and 20 degrees post-surgery
    Dr. Kim Hammerberg, Shriners Children's Hospital, Chicago
    Back into volleyball and music as a senior in college!

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