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.

Monday, June 1, 2009

HUKM Specialist Centre

This was where I had both my surgeries and this is the first stop for me in my attempt to reach out to specialists and patients alike in my hopes for a scoliosis support group. The only problem is that it is always a tad difficult to get through to HUKM phone lines. Oftentimes noone would answer its main line. And with the specialist centre, I think they changed their numbers recently and that's why I've been having difficulties reaching them. But I will keep trying. After all, I've waited nearly 19 years for this. The idea was always there, but studies and work always took up most of my time.

I am positive I'd get the opportunity to see Prof Mat without much difficulty. He always makes time for his patients and would see me whenever I stop by to say hi (whenever I'm in the neighbourhood). The only issue here is to find out when his clinic day is at the HUKM Specialist Centre because that is the best place to catch him face-to-face.

My next focus is the "marketing" aspect. How to inform people of this blog and how I hope to gather Scoliosis patients together for an support network. Am in the process of working this one out and will update on this soon.

Wish me luck, everyone. I hope this idea will really take off and materialises itself.


Turns out that now Prof Mat's clinic days are usually seen to by other doctors than himself. Doctors from his team, I was told. We'll see how this one pans out.