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Pooka1
04-04-2011, 07:15 PM
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.

Pooka1
04-05-2011, 06:11 AM
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!!!

Pooka1
04-05-2011, 06:12 AM
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

Pooka1
04-05-2011, 06:13 AM
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.

Pooka1
04-05-2011, 06:14 AM
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

Lilysaidwhat
04-05-2011, 08:40 AM
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. ;)

texfinn
04-05-2011, 09:57 AM
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!

Pooka1
04-05-2011, 10:01 AM
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.

Elisa
04-05-2011, 11:18 AM
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!

Lilysaidwhat
04-05-2011, 11:20 AM
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!

Ballet Mom
04-05-2011, 11:43 AM
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.

Pooka1
04-05-2011, 12:14 PM
.

OFF TOPIC. Please delete

Pooka1
04-05-2011, 12:16 PM
.

OFF TOPIC. Please delete

mariaf
04-06-2011, 08:06 AM
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!

scolio1964
04-07-2011, 09:31 AM
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.

Pooka1
04-07-2011, 10:00 AM
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.

titaniumed
04-07-2011, 05:01 PM
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

green m&m
04-30-2011, 03:35 AM
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.

titaniumed
04-30-2011, 10:29 AM
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

hikerchick
07-08-2011, 02:00 AM
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.

JenniferG
07-08-2011, 04:51 AM
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.

Resilience
07-09-2011, 01:47 AM
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.

so_shy
07-09-2011, 06:05 AM
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.

CURVaceous
07-09-2011, 02:02 PM
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.

Karen Ocker
07-09-2011, 03:25 PM
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(?)

flerc
07-16-2011, 10:47 PM
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.

Tyler
07-18-2011, 08:09 PM
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.

titaniumed
07-18-2011, 10:33 PM
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

JavaLover
07-18-2011, 11:16 PM
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.

braceyourself
07-19-2011, 09:47 AM
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.

flerc
07-19-2011, 09:56 AM
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.

Karen Ocker
07-19-2011, 06:05 PM
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.

titaniumed
07-20-2011, 11:43 AM
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

dailystrength
08-23-2011, 10:07 AM
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.

lray
08-26-2011, 01:04 PM
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.

titaniumed
08-27-2011, 12:15 AM
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

Pooka1
08-27-2011, 11:06 AM
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.

lray
08-27-2011, 05:25 PM
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! :)

Kayde
09-02-2011, 09:31 PM
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