Friday, June 12, 2009

Treating Scoliosis With Body Brace

Here I'd like to share my experience as a Malaysian teenager who had to wear braces for nearly 24 hours a day everyday for nearly three years (from 1992 to mid 1994).

Unfortunately there are no pictures of the braces. If I recall correctly, four different braces were custom-made for me in that period of three years. Being a typical problematic (Asian?) teenager who was in constant denial, I chose never to ask about the types of braces they fitted for me. So till this day, I have no idea what type(s) of braces they were. Hard to believe, I know. In more developed countries (and perhaps nowadays too in Malaysian hospitals), they'd inform you of the smallest details which of couse would include the type/name of the brace you're fitted for.

My first brace looked like this one..


About 10 months later I was fitted for a second brace (one has to go through this because braces are fitted as a teenager's body grows), and it looked a lot like the first one pictured above. And then some time in 1993, I remember being fitted for a brace that looked a lot like the Milwaukee Brace pictured below.



And the fourth (and last) brace that I was fitted for that looked like this..


From the pictures I've seen, I suppose that fourth brace was a Boston Brace.

All the braces were worn underneath normal clothes. Underneath the brace, I wore cotton singlets to absorb perspiration and to minimise discomfort caused by the rubbing of the braces against my skin. The braces were always worn very tight. As tight as one can tolerate, I suppose. To this day I have a few lines (permanent indentations of some sort!) around my waist and hip areas caused by the wearing of braces. My Mom used to make light of things and tell me that the braces were like my very own personal "corsets".. they'd make my body nice and shapely, and keep the tummy flat too. I used to giggle in the beginning when she said that. After more than two years of braces-wearing, you bet that it wasn't too funny anymore. The "corsets" became more like my personal prison.

And don't get me started on the fitting-sessions. Every session was a nightmare I would rather forget. Unfortunately.. one doesn't forget those things.

Just remember.. what does not kill you really does make you stronger.

Only God knows how humiliating it was for a teenager to stand there naked amongst male technicians and have her body wrapped up in some kind of gooey clay-like mold in order to make the exact "mold" / "model" of your body, and this mold is what the technicians will then use to make/create your very own customised brace. Till this day I wonder.. how come there were no female technicians..?

In UH (Universiti Hospital) where I was treated during those years, not even one female was in that room with me. I never failed to feel as if I was entirely alone, fending for myself. Sure, Mom was in the next room waiting for me, but in that room where the technicians take the mold of your body, surrounded by other people's molds of various body parts and half-finished braces for various parts of bodies for various treatment purposes... FREAKY and SCARY are the words to describe it all. It was NOT easy on the mind and soul.

My last fitting for the Boston Brace was different. No body mold was taken. The brace was fitted directly onto your body, much like the picture below.


If I had to choose, that Boston Brace was definitely my favourite brace because I didn't have to go through the humiliation of stripping naked and have my body mold taken again. Plus it was the lightest brace I ever had, and it didn't look too obvious once you have your clothes on.

In my case, the braces didn't really do any good. My curves progressed anyway, and still running from my illness rather than accepting it, we didn't opt for surgery until I was 23, in 2002.

Still, if I had to do it all over again, I wouldn't change a thing. I know the doctors did the best they could (considering back then there were very few places treating scoliosis, doctors were limited and the doctor-patient ratio was ridiculous), I did the best I could, and let's not forget.. my parents did the best they could. The sad fact was that we chose to live in denial. We didn't look into other options, and we didn't try to learn more about Scoliosis and its treatments and what would happen as I grew older. Those are my mistakes and I've had to face the music and have the surgeries done in the end.

I hope one day others will come forward and share their stories about the treatments they went through. And maybe one day we can be there for other young ones who has to go through the same sort of nightmare we went through. Except maybe, just maybe it can be different for them because someone will be there for them, to hold their hands. Or simply just to be there.

My dreams are huge and sometimes it feels like time is my enemy! So much to do, so little time. Life and family takes so much time and here I am trying to figure out a way to give a little back to other scoliosis patients.

7 comments:

Caring Mom said...

Hi, i really salute you for your tolerance level and its unbelievable that you wore so many braces all in all. I can understand how uncomfortable the brace is cos my girl who is 13-year was wearing for about 6 months but it didn't help and she was operated last May 09. She is recovering very well and I thank God for it. I totally agreed with you that Malaysians are ignorant of scoliosis and I think schools should conduct screening at primary level cos that is the age when the problem begins.

Twillight Princess said...

Hi,I'm 13 years old,and I have idiopathic scoliosis...what I'm wearing is the SpineCor brace.I guess its much more comfortable than the other braces...but,myaan...gives me lotsa pain...my hip aches a realy unbearable pain sometimes and it feels like knives piercing through my flesh,whenever that happens I have to stop whatever I'm doing.My hip area has permanent numbness.Well,the doc gave me a pad for it,so its not hurting so frequently.Wearing this soft brace thing is a pain...but I guess its my only cure now...rather than having operation.

Nina said...

caring mom; i hope you girl has fully recovered by now :) lets hope that one day this dream of setting up a support network will come true! maybe one day by working together we can increase public awareness on scoliosis. developed countries have screenings at primary levels, i dont see why they can't do the same here. one day, one day..

twilight princess; hello there! you're a tough girl to tolerate such pains. yes wearing braces is no easy feat indeed. hang in there.. trust me, one day this'll all be in your distant memory. if you wear your braces as instructed and do physiotherapy exercises regularly, you might be able to avoid surgery in your lifetime. but you're entitled to your days of frustrations and anger! just remember that there're many of us out here and we're here if you need to reach out and talk. hope things'll go well for you :)

oneandup said...

hi everyone! my 12 y. old girl just got her brace 2 days ago. she was diagnosed with juvenile scolio when she was 5 yrs. old. regular monitorings were done till the inevitable came recently, she had to wear brace already. i've been dreading that! my gosh, if i could only take away the pain and anguish from my baby. the sad thing is she's trying so hard to be very brave about the whole thing. i can imagine how hard it is for her, the brace is quite heavy for her frail body. she's very concerned about how weird and freaky looking she is now. it hurts me so much. i feel so bad for her. we are trying to make this easier for her and for everyone. do you have any suggestions on how to deal with skin irritations? she only wore her brace very recently and her skin is also irritated, we already wrapped (with 100% cotton cloth) some areas of the brace. would really appreciate any info. thanks.

oneandup said...

hi everyone! my 12 y. old girl just got her brace 2 days ago. she was diagnosed with juvenile scolio when she was 5 yrs. old. regular monitorings were done till the inevitable came recently, she had to wear brace already. i've been dreading that! my gosh, if i could only take away the pain and anguish from my baby. the sad thing is she's trying so hard to be very brave about the whole thing. i can imagine how hard it is for her, the brace is quite heavy for her frail body. she's very concerned about how weird and freaky looking she is now. it hurts me so much. i feel so bad for her. we are trying to make this easier for her and for everyone. do you have any suggestions on how to deal with skin irritations? she only wore her brace very recently and her skin is also irritated, we already wrapped (with 100% cotton cloth) some areas of the brace. would really appreciate any info. thanks.

madolyn said...

hey. im 14 and i am going to get a boston brace in janruary for my scoliosis. i have a couple of questions.
1.will it hurt
2. are clothes like impossible to look good in then the brace is on
3. do you get to choose between like the spinecor and boston?
thanks!!

Kourtney said...

to madolyn; i am wearing the boston brace now, if you can DO NOT get it. it is ruining my life to no end. i am in constant pain!
1. yes it will
2. i have to wear boys tee shirts a lot bc i look all lumpy and fat in it..
3.my doctor never mentioned the spinecor brace but i am getting it next friday!!! the spine cor brace is flexible and is acctually better for your back.