The Importance of Diagnosing Scoliosis

I always believe that you are the expert of your own body.

Many people with Scoliosis out there have been diagnosed and have received treatments, or receiving treatments right now. But there are also many individuals out there who suspect, or know that there is something wrong with their bodies. With their spines. And everyday they live in worry or pain or even fear, because they are unsure of what to do.

This might come a little late, but lets look into some definitions of what "Scoliosis" is. Before I begin, again please bear in mind that this site is not a medical site. All contents are based on personal experience, personal research and personal opinions. So please forgive any mistakes on my part and I welcome inputs from better-informed individuals :)

This wikipedia article gives a simple but thorough explanation of what Scoliosis is.

From the article, we concur that Scoliosis is a medical condition in which a person's spine is curved, from side to side. The two common curves for Scoliosis patients are usually either "S"-shaped curve, or "C"-shaped curve.

The first thing that Scoliosis patients must realise is that every two patients' curves are not the same. The curves, its severity, its degree, and the discomfort or even pain that a patient goes through is not similar and alike to all other patients.

Lets take a look at the different curves pictured below.

The illustrations above show the different types of Scoliosis curves. Curves can be thoracic (upper spine), lumbar (lower spine) or even thoracic-lumbar (involving both the upper and lower spine). Patients with Scoliosis might have a curve curving to the right side of their bodies, or to the left, or both (in S-shaped cases). Some people have slight curves which some doctors would choose to monitor, or treat with bracing. Some people have moderate to severe curves that require bracing or even surgery.

The point that I am trying to make is that each person's Scoliosis is unique.

And this leads me to the next point...

This unique reason is why it is very VERY important to get proper diagnosis for your Scoliosis.

By proper diagnosis I mean a diagnosis made by a spinal specialist, a doctor who can tell you exactly what your curves look like, how un-severe or severe it is, and what treatment options are there for you specific situation.

My friends, going to the doctor and hearing their explanation can sometimes be a daunting prospect. Scary, even. But getting a proper diagnosis for your condition is vital because only then you can decide which course of action to take for yourself.

Noone can force you to wear the braces or have a surgery. Not even a frightening-looking doctor. Forgive me, dear doctors; please know this is not a personal attack on doctors as a whole!

What I am trying to say is that it is important to know the reality of the situation you are facing, and what might lay in the future for you if actions are not taken.

Don't postpone your diagnosis. Don't postpone hearing your treatment options. Because one day you may very well regret it.

Today your condition may be treatable. Today your condition may allow you to live like a normal person.

But ten years from now the pain may be severe. Ten years from now the curves may have doubled. Ten years from now you might have to resort to corrective treatments which could have been avoided if you are treated now.

Trust me on this. I know this because I've made that mistake before.

Back in 1994, they said I needed a surgery. My curves were about 50 degrees back then, and although I did experience some pain on a daily basis, it wasn't anything I could handle.

By 2002, my curves had progressed to between 80-95 degrees each. I had a huge hump on my back (I looked like the Hunchback of Notredam), clothes didn't fit well at all, and worst of all was that I had pain every single day. It hurt to exercise. It hurt to breathe sometimes (because the curve was pressing against my lungs).

In life there is no "should have", "could have" or "would have". You cannot look back and change things even if you wanted to.

So.. as daunting as it may seem... go get a diagnosis.

And then, where you choose to go from there is entirely up to you. Noone can force you to do anything you are not willing to. But this is something you can do for yourself.

You can learn the truth and deal with it now, rather than kicking yourself in the hind region perhaps ten years down the line.

Tips on Wearing Body Braces to School

Many have asked me about how it is like for a teenager to wear braces nearly 24 hours a day. Many have also asked for advice on how to make braces-wearing easier.

The truth is that I cannot speak for all patients who've experienced bracing. I can only speak of myself and share my experience with others. And because each of us has somewhat different experiences, that is why it is so important for us to share stories and information... because maybe our stories and experiences would be useful and insightful to others who are going through similar situations.

So lets talk about wearing braces to school.

This is Malaysia. It's hot, humid and sticky here. Tourists come here to parade around in sleeveless or shorts and bikini tops.

The last thing any girl (or boy) wants to do is wear a hard, thick plastic corset under those warm layers of school uniforms.

Our friend Twilight Princess (I hope you don't mind me quoting you here) mentioned that she wears the SpineCor brace. I Googled it and this is what I found.


Apparently SpineCor braces are dynamic braces which allow more flexibility in movements as compared to older braces made of hard plastics and metal.

But let's face it. The truth that we cannot deny is that no matter how "flexible" or "dynamic" braces are... braces are still braces.

Braces brace your body. They have a job to do. That job is to hold your spine in place, to ensure that your curves are managed and not worsen.

The following is a detailed photo of a SpineCor brace.


These photos are put here as illustrations to show what we have to put on our bodies. These braces made of synthetic materials which should be worn above cotton singlets or cotton t-shirts should ideally go underneath your day-to-day clothes because noone really wants to go around wearing braces over their day clothes. So that's how I wore it; I wore a cotton singlet under the braces to help absorb sweat and minimize abrasion on the skin, and over the braces I wore my normal clothes. So when I went to school, I wore my school baju kurung above the braces.

I'm sure seasoned braces-wearers know all this already ;)

Okay, so below here are some tips on wearing braces to school on a daily basis. Anyone out there who would like to add their own tips, please feel free to add to this content in the comment box. Thanks!

• Choose comfortable, absorbent camisoles/singlets or thin t-shirts (preferably ones that are body-fitting) to be worn underneath the braces. Loose singlets/t-shirts are less comfortable because the braces are made skin-tight (molded to your body) and if you wear a loose undergarment, they'll create folds under the tight braces and once you start sweating, the folds of the clothes could eventually cause discomfort and itchiness. So try to look for cotton singlets that cover all surfaces of your body which the braces covers. As shown in the pictures above, the girl is wearing a nice fitting t-shirt which covers all the parts of her body that the braces covers. If there are parts of your body which comes in direct contact with the braces, it can be quite uncomfortable because sweat could make skin in that area become red and itchy.

• Do have a soothing balm or lotion at hand. The braces could cause redness and itchiness on your skin, and you will feel this mainly when you take off the braces. I personally used a lot of aloe vera gel and vitamin E lotion. Sometimes I had rashes because of the heat and sweat, and I found that putting on medicated powder before you put on the braces, and then putting some aloe gel after you take off the braces (on the red areas created by the tightness of the braces) seemed to help ease the rash. Of course different stuff works for different people. In time you'll find what works best for you.

• Bear in mind that there are just some activities that are somewhat too uncomfortable for you to do with braces on and it's okay to admit this to the teachers. School is a hot and uncomfortable place most days for braces-wearers. This may seem like an unappealing or embarrassing idea, but letting your teachers know your condition can be very very helpful. Granted, as a teenager I did use the scoliosis excuse to get out of unpleasant activities such as playing netball under a 40 degree sun.. (hahaa) but the reality is some teachers can be supportive and helpful. And the ones who aren't should be ashamed of themselves! Hehh.. that's the reality of life, folks. For instance, when I was 13 and 14 years old, I was in the evening session. On Mondays we used to have "perhimpunan" in the courtyard, right there under the hot afternoon sun. Sometimes the heat just got too much for me and I had to ask to sit at the canteen, out of the sun. Yesss I will not deny that being singled out made me feel like a freak sometimes, but it was better to face the reality of the situation rather than making a scene of fainting right there in the middle of the perhimpunan! Right? So... do try to realise what you can and cannot do, and don't be ashamed to admit it.

• Try to arrange for an occasional "time-off" period for important sports activities and such, if necessary. For instance, for sports activities (what we used to call as PJ; Pendidikan Jasmani, or for extra-curricular activities), my mom used to allow some "time off" from wearing the braces. You could say those were the highlights of my days ;) For extra-curricular activities (house practice, sports society/club and such), I'd leave the braces at home, Dad would send me to school and fetch me afterwards, then I'd wear the braces again once I got home. PJ was another different matter though. It was tough convincing my parents to let me go to school the whole day without the braces, so after much sulking (on both parts) we reached a compromise. I joined the class for PJ in the fields every alternate week. One week I'd be allowed to go to school without braces on days that had PJ classes. Then the next week I would have to sit in the shades while I watched my friends play netball because it was too hot and uncomfortable for me to join any strenuous exercise activities with the uncomfortable Milwaukee and Boston braces on. Why is "time-off" an important option for you to consider? Because wearing braces should not mean that you must stop your favourite activities or put your life on halt. It's important to continue pursuing your hobbies, just remember to plan your schedule, and plan ahead.

However, with the recent developments in braces-making, more dynamic and flexible braces such as the SpineCor brace shown above would mean that scoliosis patients could participate more in physical activities. If anyone has experience in this, please share your experiences with us.

And then there's of course the issue of your emotional state of mind when wearing the braces to school. But that's another story altogether, so we'll talk about that in another entry.

So do share your tips, people. Braces-wearing doesn't have to be a miserable, imprisoning ordeal if we manage it well, God willing! :)

Of Hopes and Dreams of a Scoliosis Patient

Today I finally managed to see Dr. Azmi of HUKM at Pusat Pakar HUKM. In reality I realise there is little need to see the doctors now that the implants have been taken out and I've gained full recovery. But to appease my ever-worried parents (and spouse), I chose to go over, at least for a chat.

And of course, there is that main underlaying reason that has been nagging at me for years. The hope and the dream of building a support network for young Malaysian with Scoliosis.

In hopes that they would not feel alone and know there are many others out there like them. In hopes that one day Malaysians would be aware of Scoliosis and respect (and understand!) those with this condition. In hopes that one day no young person has to go through what I personally went through as a teenager with Scoliosis.

The man who had skillfully operated on me and changed my life, Professor Muhamad Razak, does not hold clinics anymore. So off I went to see Dr. Azmi, the man who was there for my second surgery (implant removal) back in 2008. And here I will unabashedly admit that Dr. Azmi was also the man who had to tolerate my blabbering nonsense of chaos and panic back in that brightly lit operating theatre, as all my inner demons had surfaced then and reared their ugly heads.

We had an encouraging chat. The good doctor is supportive of the idea for a Scoliosis Support Network. I am hopeful that one day soon it will become a reality.

I am told that there is no need for an annual check-up, no need for anymore x-rays, no need for anymore physiotherapy, as long as I experience no pain on a day-to-day basis.

I very nearly got a lump at the back of my throat which had to be swallowed back (hard) upon seeing Prof Mat's scrawl of "Fully Recovered" right there on the last page of my file. If you've gone through 20 years of scoliosis treatments, pains and problems as I did, and I'm sure many of you out there did.. I'm sure you'd understand that there are moments when triumph and gladness can cause those lumps-at-the-back-of-your-throat to occur :)

Praise God. Dare I say that after 20 years, I can now live as normally as any other ordinary Jane can. Live without the fear of the curves digressing, without the fear of further surgeries, without so many nagging fears that I'd rather not go into right here, else I'd sound like a constantly whining ungrateful witch.

This blog had always been about my personal experience, and yet thus far I'd restrained writing in a very personal manner, as an attempt to stay objective on the subject of Scoliosis.

But lately I've realised, there is no separating Scoliosis from my personal emotions and wellbeing. Scoliosis is in you, it makes you the person that you are because you live your whole life with it and you can't run away from it. If you're a scoliosis patient, scoliosis is you.

This is not a site of a medical expert. My opinions are shallow and from the perspective of a Scoliosis patient, 31 years of age, first diagnosed with Scoliosis at the age of 12.

I will continue writing on things that are relevant to all Scoliosis patients out there, in hopes of reaching out through sharing of information and personal experiences. And I hope those of you out there will share your experiences with me as well.

Because this can be the start of something great.

Apologies for Hiatus

Thousand apologies for the long hiatus from this blog! I think about this blog often, it's just that time hasn't been on my side lately due to personal reasons. I don't get really personal in this blog because this blog is supposed to be dedicated to topics related to scoliosis. But I suppose one can't avoid the "personals" sometimes. To make a long story short, life at home has been challenging and yet enlightening for a few months now since our maid ran off. And yes, that's the reason why this blog has been neglected for so long and all the comments left unreplied. Again, my apologies.

I hope the year will bring more productiveness and that this blog will not be neglected again. God willing :)

The Titanium Implants

First and foremost, thank you to those who visited this blog and left your comments. Please please don't hesitate to get in touch with me (my email address is available here) because this condition that we have can be a very hard thing to handle on our own. Perhaps by building a network, we can be there for one another and feel a little less lonely about suffering from Scoliosis.

There is a need to reach out and talk about things we don't get to talk about with our everyday friends (and family) who don't experience Scoliosis, and my aim here is to share my personal experiences as a Scoliosis patient. I hope one day others will share their experiences here too.

I talked about the titanium implants in my personal blog. If you've the time and wish to know about removal of titanium implants, do give it a read.

FYI, I had my fusion in October 2002, and had the implants removed due to infection in April 2008. A screw had broken and caused the implants to become loose (in laymen's terms). The area surrounding the implants became infected, and there were some symptoms involved.

Here I'd like to talk about the symptoms I experienced when infection developed due to the titanium implants. Perhaps this will be helpful to someone out there some day.

The first thing that I noticed was that my spine started hurting more and more. I'd given birth in December 2006, and by December 2007, I was experiencing pain nearly 24 hours a day. I thought it was because I was overdoing it. Our boy was hefty so I attributed the pain to the fact that I was always carrying him, so that was why the good ol' spine was always in pain. It's difficult to explain how the pain was like, but if you've had surgery and have implants on your spine, you'd know what I mean when I explain it like this.. it as if the implants were starting to bother me a lot more and the areas around the implants would throb and sometimes there were sharp pains that came suddenly.

By January 2008, I started developing high fever. The fever came on a daily basis, only subsiding whenever I took paracetamols. They did blood tests and at first could not find anything wrong. A month later I was still having fever everyday. A blood test at Assunta Hospital showed that there is infection somewhere in my body, but they could not detect the source. Then an x-ray showed me my worst fear; one of the screws on my spine had broken and the doctors suspected that that is causing infection in the surrounding area.


I frankly could not comprehend the news. It was difficult to accept the fact that they would have to open me up again, this time to remove the implants. Putting them in there was VERY painful. The pain is something I was not willing to go through again. Therefore I opted to see my surgeon (Prof Muhamad Razak, HUKM) to discuss pain management. At that time, removal of the implants was not an option for me.

By end of February I was on pain meds (Arcoxia being the drug of choice). The pain however did not go away. Even with the medication, I hardly slept because of the pain. It was difficult to get out of bed and work.

By March the pain had spread down my left leg and my left leg started losing sensation. By April I could hardly walk and had to be supported by family members when walking. I fell many times because the left leg could not support my weight and the right leg was getting weaker as well.

So in the end, a surgery was performed to take the implants out. The broken end of the screw, however, is still here in me.

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.

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.

Update:

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.