Friday, March 19, 2010

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.

Thursday, March 11, 2010

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! :)

Friday, March 5, 2010

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.