Living With Scoliosis

Having Kids, With Scoliosis

2011-11-14T20:08:00.000-08:00

I am now a proud mother of two boys, Alhamdulillah.

I am also still a person with scoliosis, although "corrected", I still have discomfort and slight pains on a daily basis. I have a chubby baby whom I cannot carry as often as I would like to, and although I invest heavily in gadgets that help lighten the burden of caring for two boys, i still worry and "fear" pain on a daily basis. And I still worry when I think about getting old with this Scoliosis.

There, I've bared my soul here in this entry :)

Our second baby, Ilan, was born on 26 August 2011. Weighing 3.11 kilos, through a c-section. There were contractions happening as early as when I was 23 weeks along, so when Ilan was finally taken out, I was told that my womb had grown so thin, it is advised for me ot to have another baby for at least three years. But Alhamdulillah, everything turned out fine.

Ilan is now 6 kilos and even at his weight now, I can feel a strain on my back after carrying im for long periods of time. A few times when I fell asleep in the "wrong" positions after a night of breastfeeding, the old corrected rib hump throbbed, and tingled, like someone was lightly poking needles on it. A few times when that happened, I dragged myself to the gym and walked, or cycled, or cross-trained. Then after the usual back-strengthening exercises on the machines and also with free weights, the back and spine feels human again.

Motherhood is not easy, thus I've grown a newfound respect for my mother and all mothers out there, since I had my first baby years ago. But undeniably, motherhood with Scoliosis.. has its own unique challenges.

Alas, the last thing we should beis discouraged! Scoliosis is and should not be an excuse for us to not have a "normal" life :)

When I was 15, I vowed never to get married because of the boys in school who teased me for being "cacat", because I looked odd with the bulky body braces on! When I was 23, my now-husband was already in my life and went through every step of recovery with me after that first surgery. I had vowed then to never have children, because noone should have to go through the kind of pain I experienced after the surgery! What if my kids get scoliosis....? No, no.

So what am I doing in a marriage, with kids now??

Well call me selfish. I have Scoliosis and still want to live a normal life. My boys are the best thing that have ever happened to me :)

So whatever your chosen path is, dear friends, do not fear to take it! Be it marriage, or career, or any life-changing frightening prospect.. Take it.

An Excusable Hiatus..?

2011-08-07T08:50:00.000-07:00

I've neglected this blog once again for far too long. However... (ehem... yes I do feel guilty even as I am saying this!).. I do have a perfectly good reason this time.

Today I am exactly 33 weeks and 5 days pregnant with our second baby.

Yes we are ecstatic, praise Allah :)

This pregnancy hasn't been as easy as the first one (back in 2006 when I was in my 20s), and I do think that age is indeed a factor. Although this time around the good ol' spine was in good shape when the pregnancy began, it hasn't been easy on the spine since then.

I've tried to keep my weight down (as weight gain isn't good for the spine) through a regular exercise regime involving the gym and outside activities, but have still gained about 10 kilos so far. As the pregnancy progresses, my lower back experiences more pain and my upper back gets stiff easily.. and it isn't very easy to motivate oneself to get out of bed and get to the gym when the body feels so heavy!

But dear friends, the reality is that if we have scoliosis, we cannot afford to be lazy.

So here I am, nearly 9 months pregnant and still exercising 3 to 4 times a week, or as often as I can manage.

InsyaAllah, I will post some entries on how a scoliosis patient can continue exercising while being pregnant soon, hopefully before I give birth :)

The Pain in The Neck

2011-02-05T07:14:00.000-08:00

The trouble with living with Scoliosis is that oftentimes you think you've grown to the physical discomfort and pain that comes with having Scoliosis. Then sometimes life throws you a curve ball which tests your limitations, patience and faith.

The truth is not very spectacular, it's just a pain to deal with *ironic smile* :)

Earlier this week I woke up with severe pain in my neck (yes this does sound really odd, but it's true), which has not ceased since then. Malays would call it "seliuh bantal"; which basically means you'd sprained your neck while sleeping on your pillow. In other words; sprain your neck in your sleep. The trouble about having a sprained neck with this Scoliosis of mine is that it causes a whole lot of other pains. Not only the neck region is throbbing (spasming), my upper curve (i.e. the upper spine.. recall that my spine has the S-curve) as well as the rib hump they'd removed and repaired in the spinal fusion back in 2002 are hurting as well.

And here I thought I'd taken all the precautions to avoid any spine-related injuries! I use proper support pillows, sleep in proper sleeping positions (never on my stomach, never in positions that do not align the spine properly) and on top of that, I exercise the back regularly and try to get sufficient rest every night for the sake of the spine. And still somehow during the early hours of that fated night, I managed to give my neck a really bad sprain.

I went to an acupuncturist in Taman Megah here in Petaling Jaya and Alhamdulillah, the neck can move during the day. But the nights are still utter agony. This being the worst sprain I've had so far, I suppose it'll take time to heal.

If you think I'm moaning about it, well maybe you're right. But the truth is I just want to write about this as a reminder to all of us with Scoliosis.

It's so important for us to take precautions to avoid injuries. To never take for granted about the littlest thing in life, like sleeping positions or daily activities (like lifting a heavy item) that can hurt the spine. Because any injuries, combined with this existing condition that we have (Scoliosis) can bring severe pain and discomfort in our daily lives.

So take care of yourselves, dear friends. Live life, live strong, but live it carefully. May God be with you!

Common Questions from Newly-Discovered Scoliosis Patients

2010-12-18T03:10:00.000-08:00

Many people with Scoliosis email me through this blog and I must say, thank you so much for your emails and thank you for reaching out to a fellow friend with Scoliosis. For many of us, the questions that plague us are similar, although we may not know that.

Here I will try to lay out some questions that are most common, usually coming from those who have just discovered about their condition, or from those who know that they have Scoliosis but have not received treatments of any form for their condition.

Q: Where do I go to check my Scoliosis? Who do I see?

A: It is most usual and advisable for a Scoliosis patient to see a medical doctor, a specialist who specialises in spine. There are many orthopedic specialists out there, but I personally would go for a spinal specialist right away because they have sub-specialised in treating the spinal cord. There are many spinal specialists now in Malaysia, be it in government or private hospitals. If you choose a private hospital, you simply call in and set an appointment. I am not too sure about government hospitals, but nowadays I suspect you could do the same (call in and inquire about making an appointment with a spinal specialist).

You will need a referral letter from any doctor (just go to any clinic and tell the doctor that you have Scoliosis, and you need a "referral letter" from the doctor which specifies that you have Scoliosis and need to be checked by a specialist). This referral letter will be given to the specialist on the day of your appointment (you could make several copies of the letter if you choose to go to several different specialists to get more than one specialist' opinion).

Q: What happens during the first hospital check-up?

A: If it is your first check-up, they will send you to do x-rays on your spine. From the x-rays, the specialist will then tell you the condition and severity of your curve (the shape of your curve, single curve or double, non-severe, moderate, severe, etc.) and the degree(s) of your curve(s).

Q: What are the treatment options available?

A: The specialist will explain to you the options available to you (physiotherapy, bracing, surgery, etc.). He/She will recommend the treatment options for your specific condition.

But as a patient please note that there are other treatment options available as well. Many private clinics are available nowadays that provide physiotherapy, chiropractor services, acupuncture, and so on. Here's one example of such clinic. There are a few others out there, so please do your research. My knowledge of these treatments and the clinics available out there is limited, but for those who chose alternative treatments other than those suggested by your spinal specialist, please do intensive research before deciding on the course of action suitable for you.

Q: Will I need to go to surgery?

A: Again, this depends on many factors. It depends on the severity or seriousness of your curves, it also depends on your financial abilities, personal preference, and so on. For some, surgery might be the only solution (as I believe it was my only solution because my upper curve had exceeded 100 degrees back then).. but it may not be necessary if your curves are not severe, and if your spine does not get in the way of normal day-to-day living. Again this is my personal opinion on the matter. Even if your specialist suggests for you to do a surgery, noone can force you to take this step unless you yourself choose to do so.

Q: Will I feel better if I have a surgery?

A: No one will know for sure! Surgery is not a miraculous solution, it is not the end of the road that will heal all pain and problems. In my situation, surgery was necessary, but remember.. living with Scoliosis is a life-long condition. Choose a treatment option that suits you and your condition.

Q: Should I go for physiotherapy or bracing?

A: This is again up to your doctor, and you. The situation differs for every patient. Do not give up and keep trying. For some, physio and bracing work well. For some, surgery may be the answer. Some might even choose to forgo all these formal treatments provided at the hospital and opt for alternative treatments (chiropractor, acpuncture, etc.). I did physio and bracing for two years in my teenage years and it did not help me much as my curves were very progressive. But I know some people for whom physio has worked wonders in decreasing their pain and improving their daily lives. I also know of a few others for whom bracing worked well in containing and improving their curves. So in my opinion, it is really a matter of trial and error... and a lot of faith and luck as well.

Q: What if I do not get my Scoliosis treated at all?

A: Yes you can choose to do so. But in reality, if you have Scoliosis, you cannot run from the fact that it is a lifelong condition that you have to live with forever. At some point of your life you may feel discomfort or pain while doing daily activities. When or if this occurs, you must realise that it is necessary to take actions. Even the simplest action like exercising more to ease your daily pain is a good action!

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So there you have it.. the most common questions that I get asked about by those who have just discovered that they have Scoliosis, and those who have not had any treatments for their Scoliosis.

Of Little Achievements

2010-12-02T10:09:00.001-08:00

This year has been full of unexpected things.

What I mean is.. things that I didn't expect to be able to do as a person with scoliosis (and having had two surgeries already)... have materialised, much thanks to Allah.

You can read about them here.

I ran (more like brisk-walked and half-jogged!) and finished 6 marathons in the past 6 months :)

This week I went for a RPM / spinning class and I am super-excited about it. Never once in my life did I imagine that I'd one day have the ability to be a regular gym-goer.. and to be able to attend exercise classes, just as if I am fully normal. Praise God.

To my scoliosis friends our there who are going through hard times and feeling as if normality is so much out of reach.... please have faith. Have faith in yourself. Have faith in a Higher Being (whatever your religious believe might be, it doesn't matter.. have faith in a higher power..). Have faith, stay strong, and don't give up on the hope that one day normality will be within your grasp and in your life once again.

Trust me. I didn't even think I could walk again. Whatever negative feelings, depression, frustration, helplessness, anger, envy, hopelessness that you may feel... I've felt it too. And sometimes on bad days, the feelings still come knocking on my door.

And to my scoliosis friends who are living the very much sought-after normal life we often hope and pray for..

Let us say thanks and cherish these moments.. one day at a time :)

For who knows what tomorrow holds for us...?

Physiotherapy

2010-08-10T10:26:00.001-07:00

Only a professional physiotherapist can or should be allowed to design a tailor-made physio program for any Scoliosis patient. Every curve is different, every patient is different.

As a teenager, I saw the physiotherapist at UH (now more commonly known as UMMC) a few times so that she could update my physio-exercise regime. The odd thing though, back then, regular physio sessions weren't really the priority. If I recall correctly, I saw the physio once when we first discovered my scoliosis (at 12 years old). She gave me several exercises to do twice or three times a day (or more often if I could manage it) on my own at home. Then about 6 months later my Dad insisted we saw the physiotherapist again, so they gave us another session but with a different therapist. About a year later, Mum asked them if we needed to see the physiotherapist again, but they said there was no need.

To this day I do wonder if things could've been different if they put equal importance on both physio and bracing instead of just emphasizing on the importance of bracing to contain the curves because research now shows that in many cases bracing made no difference.

Now patients have more options and have more voice. We SHOULD remember that we have a voice and we have the right to ask questions and voice out our hesitations and doubts. If your doctors do not give your voice much attention, that is simply unacceptable.

A lot of young people with Scoliosis are going for regular physio and in some cases bracing isn't the main emphasis (depending on the individual cases and the doctors handling the case). So hopefully there are now more ways for us to live more comfortably with our curves and handle our pain better.

Okay back to physio.

Does physio help? I am not a trained professional, but I am a Scoliosis patient who's lived with it for 20 years. So yes, I believe physiotherapy helps.

In terms of whether it helps reduce the curves, I cannot say because I have no real knowledge, no personal experience or authority to say such things.

But in terms of pain management, physiotherapy exercises do help most patients manage their pain better, I believe.

Everyone is different and have different opinions, of course. What I felt was that although there might be some discomfort or pain when you're doing the exercises, the spine and back muscles do feel a whole lot better after you've done the exercises.

So in conclusion, if you have pain due to Scoliosis, looking into physiotherapy might help you manage your pain better.

Guilty As Charged

2010-08-10T10:17:00.001-07:00

I've been guilty for not blogging often enough. Guilty of not replying to comments and emails soon enough. My deepest apologies for that. Always.

Life's demanding and don't we all know it. Everyone's singing that same song now.

I'm going to be selfish for a minute here and update on my progress.

Since starting the gym and having a trainer who designs the workout programs to fit my curves and needs, I've lost 6 kilos and it feels great. Not specifically because of vanity purposes (heck, who am I kidding, right? A girl's has needs to be vain!), but mainly because I feel lighter and healthier. My spine really does feel stronger.

I am absolutely serious when I say I have never felt this strong in my life.

Strengthening the back muscles have helped tremendously in improving my quality of life. I can now help my son onto the throne, or even into a supermarket trolley (I couldn't do this before because my back would ache badly afterwards). I can now get on my knees to scrub the kitchen floor (although being pampered by good ol' husband is always a good thing to have, LOL). And I can now pray like a normal person with little limitations. Rukuk, sujud, duduk tahiyat awal and akhir.. they're all doable now. This is super awesome to me because I haven't been able to pray this way since I had the implants put in during the first surgery in 2002.

I still take it slow and am always very careful before doing a strenuous activity, but regular exercise and training has given my scoliosis some miraculous progress and improvement.

Okay that's enough of the me-news. Now on to something else.

Physiotherapy.

Lets talk physiotherapy.

Basic Exercises for Scoliosis Patients

2010-05-15T08:10:00.000-07:00

As a person with scoliosis, the primary goals of an exercise program for your spine should be to make the muscles of your back, shoulders, and upper back strong and flexible. (Quoted directly from this site) As your back muscles become stronger, your back will feel less tight and more flexible. In many cases, once your back muscles become stronger, your pain might decrease or at least become more manageable.

This site indeed has some good basic exercises for scoliosis patients, aiming to strengthen your back. They even have videos showing how the exercises are done.

Please bear in mind that you should only proceed if the exercises do not cause you discomfort or pain. And if you're worried, do talk to your doctors first. However, I've tried the exercises and found that they're light exercises, aimed to make strengthen your back and make your back feel good. They are not to exercises to 'correct' your curves, but they do make my spine feel more flexible and less taut/tight.

IMPORTANT TIPS for those just starting to exercise:

- Start slow. For instance, start with a 15 minute walk at moderate pace. Then slowly build up as you feel stronger. You could increase to 20 minutes at faster pace, then 30 minutes, and so on.
- When doing weights, start with light weights. I started off with just 1 kilo weights. Build up as you go, but never to the point of feeling pain on the spine.
- "Tingly" or "prickly" sensations around the back muscles when you first start your exercises is normal. But stabbing pain on the spine is NOT normal. Stop immediately if you feel any pain on the spine!

Lastly, I like what this site says about scoliosis and exercise:

"Scoliosis is not related to flexibility issues or lack of strength. Scoliosis does not act as a deterrent to normal physical activity. Children and teenagers with scoliosis can participate in sports and recreational activities. They can even perform normal exercises that help build muscle strength and endurance. They can even train to improve their cardiovascular conditioning like normal people."

The Importance of Strengthening Your Back Muscles

2010-05-14T11:01:00.000-07:00

I have so much to share but there is always so little time in a day!

But I've got a piece of good news and new discovery to share with my fellow scoliosis friends. Alright, maybe this discovery is not so new for some of us out there, but it is to me :)

About two months back, I discovered I had some free time in hand while the son is at playschool. So I decided to join the gym and get some serious workouts done.

I've always been a big believer in exercising. As a teenager I didn't really like physical activities because I was teased in school for wearing a bulky body brace, and for being so clumsy and not well-coordinated enough. Things were emotionally hard back then, so I didn't participate in sports much. If I had a regret about scoliosis, that would be it. I let the teasing and my lack of confidence get in the way and I wasted precious years not using vital parts of my body.

It wasn't until I was in college that I started brisk-walking and swimming on a daily basis in an effort to lose weight. I didn't lose weight much, but I was in good shape and felt good about myself. I had my first surgery within months of finishing my degree, and as soon as I could walk, I got my Dad or my then-boyfriend (now my husband) to drive me to Kiara Park so that I could walk. At first I walked so slow that everyone stared and wondered what was the matter with me. And at first it took me nearly 30 minutes to complete one round around the park. But I kept walking, sweating in my singlet and post-surgery body braces, not caring about those stares and whispers. And to this day I am glad I ignored them all!

Six months later I was out of the braces and walking 5 to 7 rounds (I took the big and uphill routes too) every single day. I had lost 15 kilos since the surgery and feeling good about myself.

Throughout my postgraduate studies in Melbourne, walking was my major exercise. A couple of years later when I felt super-strong, I started buying aerobic and strengthening workout videos to do on rainy winter days. I hiked a lot too on weekends and holidays. Hence I maintained my weight until I got pregnant with my son four years after my first surgery.

During my pregnancy I gained 16 kilos but kept active. I tried to workout three times a week throughout the pregnancy. After giving birth, it got hard to stick to an exercise plan. I was working and we were moving house, then the implants got infected and I couldn't walk for half a year. I started walking again when my son was 18 months old. That was when I decided to restart a workout schedule.

I walked at the park 5 days a week, 30 minutes each time. But it wasn't sufficient. My spine, and back muscles still didn't feel strong enough.

So now I've joined the gym. And to make full use of the gym, and to build strength on my back I have a personal trainer to train me twice a week. So every week while my son is at school (he goes to playschool three times a week), I'd be at the gym. Aside from that, I make sure I work out on my own home equipment three times a week. In total, I try to work out 6 days a week, about an hour to 2.5 hours each time.

And lo and behold, I am amazed at the strength that exercise can give us!

By us, I specifically mean us with scoliosis condition.

For the first time in 8 years, I am praying normally (standing up, with abilities to bend and prostrate as I wish). I can lift groceries, I can even lift my son (although I don't make a habit of it), I can bend down to look for things under the bed.. and so much more. My back muscles feel strong and capable of living a very-nearly-normal life. Praise God.

So what is my point here??

The point that I am trying to make is.. don't give up!

When you have scoliosis, some days the pain can drag you down. Some days it doesn't seem as if you will ever be normal or live normally. Some days there are just so many things that you cannot do.

Fight it.

Fight the pain. Exercise.

Go ahead, try it :)

Start with walking. Just walk. Go to the park and walk. Move your arms in silly ways that make you feel good and ignore those evil-starers. And don't stop for 30 minutes.

Stretch when you're done with your walking. Stretch your legs, your arms, your back. Be careful, but stretch. And feel good about your achievement. Because this will be the start of great benefits.

There are specific exercises to do to help strengthen the back muscles. I'm not talking about strengthening the spine or exercising your curves. What I mean is, if you concentrate on strengthening your back muscles (those muscles surrounding your back area), you can minimise discomfort and pain, and you'll also find yourself feeling stronger and better about yourself.

If you're unsure and need help, do talk to your doctors and physiotherapists. Ask them about suitable exercises. If you can find it, find a trainer with experience in aiding scoliosis patients.

In the following weeks I'll take some pictures and talk about the back exercises that I do, for the sole purpose of sharing personal experience and giving an idea of the benefits exercise can give scoliosis patients.

Is there anybody out there who have inspiring stories of fitness or strength-related discoveries to share? We still have much to learn about how exercise can benefit our scoliosis condition!

The Importance of Diagnosing Scoliosis

2010-03-19T10:30:00.000-07:00

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

2010-03-11T09:12:00.000-08:00

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

2010-03-05T10:17:00.000-08:00

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

2010-01-16T09:39:00.000-08:00

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

2009-08-12T10:05:00.000-07:00

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

2009-06-12T01:16:00.000-07:00

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

2009-06-01T21:14:00.000-07:00

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.

My Life as a Scoliosis Patient

2009-05-20T02:51:00.000-07:00

I am a thirty year-old wife and mom who was first diagnosed with idiopathic (juvenile/adolescent) scoliosis when I was 12 years old. Mine is an S-shaped curve which were about 20 degrees each (I can't recall the exact figures) when first diagnosed. I was immediately fitted with a "body brace" and had about four different braces in the course of 3 years. At age 15, my curves were reaching 40+ degrees and was told by the team of doctors that I'd have to be operated and stainless steel implants would be put in to correct my curves. I was not told about the fact that the curves would progress as the years pass, and they would get increasingly worse as time goes by. Not knowing this fact, my parents and I decided not to have the surgery then and fled from further medical treatments. Sadly enough, the doctors did not even insist on continuing any treatments or offer any alternatives for us.

Hence I lived in blessed ignorance for the next 8 years until one day when I sprained my back at age 23, and decided to go see a spine specialist. A cousin-by-marriage who was training to be a spine specialist recommended a few names. That cousin is Dr. Ahmad Nor Shahrid, the spinal specialist practising in Sungai Buloh Hospital here in Selangor, who is now training in Adelaide.

We sought a few opinions. The first was Dr. Abdul Malik in Damansara Specialist Hospital. The second was Dr. Ali in Ampang Putri Hospital. The third was Professor Dato' Dr. Mohamad Razak (dubbed Prof Mat by myself) in Hospital Kebangsaan Universiti Kebangsaan Malaysia (HUKM), with whom I decided to operate with.

The S-shaped curves had doubled and were reaching 90 degrees each. Imagine my despair and anger towards the doctors who treated me as a teenager. Most of all, I was angry towards myself. I was an educated woman who lived in denial and ignorance, and never bothered to learn more about the health condition that I had. In my head, I brought this on to myself.

My first surgery (spinal fusion from T1 to L4) took place on 8th October 2002.

The pain. Don't even get me started on the pain. I couldn't believe anything in life could be that painful. I felt half-dead. I didn't think I could ever walk or feel normal ever again.

One week later while I was laying in bed still very much in pain, feeling sorry for myself, then a voice inside me told me that I should focus on the half of me that felt half-alive. And ignore that half that felt half-dead.

I ignored the pain and took it one day at a time. I started brushing my own teeth after ten days. I could eat by myself again after two weeks. After exactly one month, I took my first shower after that surgery all by myelf. I can't tell you how good it felt. It took a couple more months to be able to go to the toilet by myself again because I wanted to make sure I never bent, lifted or twisted (BLT) my spine in the first 6 months at least. I started my walking sessions at the park in the fourth month and never looked back. Eventually my strength increased and I walked faster and quicker. Eight months after the surgery, I left to do my masters in Australia.

The 3 years spent in Australia were the best in my life. I made sure I exercised at least 4 times a week, and did a lot of stretching and muscle-strengthening exercises. I got married in 2004 and we lived a healthy and active life. We went walking and hiking a lot.

In 2006, I gave birth via cesarean to a lovely baby boy. In January 2009, I fell ill and they suspected infection caused by the titanium implants on my spine. X-rays showed that a screw on the L4 vertabrae had broken and the rods were probably loose and causing infection in the surrounding area. I refused surgery because the first surgery I had was undescribably painful and difficult. Therefore I was put on painkillers for a few months, until I started losing sensation in my left leg. The pain had become unbearable and I became wheelchair-dependent. Work and day-to-day activities became challenging and sometimes bordering impossible.

On 30th April 2008, I had a surgery to remove all the titanium implants except for the broken screw on L4. The surgery was done by Prof Muhamad Razak and Mr. Tan from HUKM.

It has now been one year since the implants were removed and my recovery has been good. I still have pains on daily basis, but Alhamdulillah, nothing I cannot handle :) I am also more careful with what I do, and have stopped carrying our two-year old boy. I walk four times a week and do light muscle-strengthening exercises. I try to keep my weight down (the hardest task of all!) and my spirits up.

Living with scoliosis was and is not easy, but I wouldn't change anything for the world. Everything that I've gone through have brought me to this final point. It's brought me here.

Now that I have a child of my own, I'm even surer of what I need to do. I want to go out there and help others with similar condition, and perhaps some aren't as lucky as I have been.

As a teenager with scoliosis, wearing a bulky body brace and not having anyone to talk to was the hardest time of my life. And that's when I first learned that people can be cruel when you're just a little bit different. Kids taunted me in school about being "cacat". People stared when I was out and about because they wondered about the bumpy thing beneath my clothes. In a way I was lucky to have my surgery late in life because at age 23, people staring at the way I walked (very very slow and often using my Mom as a "crutch") and whispering when they see me wincing in pain or when they see the bulkiness of the post-surgical body jacket .. they were things that a 23-year old could easily live with. Because at 23, there were more important things than caring about what people think of you. I managed to focus on recovering and strengthening myself.

But I still remember the awful time I had as a teenager with scoliosis. I don't wish that upon anyone and I wish with all my might that noone has to go through the sort of treatment I got during my teenage years. But I know that there are many young people out there who are probably going through the same situation I did 18 years ago.

The Malaysian society is still quite oblivious to this health problem called Scoliosis. In Australia, checking for scoliosis is mandatory for school children, and they were educated and told about this problem at a very young age. Detection can usually be done at an earlier age, and treatments can be given more effectively. This is not the case in Malaysia, and unfortunately, an oblivious or ignorant society (although not necessarily on purpose) can be extremely hard for young people suffering scoliosis.

The emotional support is non-existent. There is no proper support group of any sort for scoliosis patients in Malaysia.

I dream to somehow change that. And to change that I have to speak out and try to reach out for those out there. Those scoliosis patients in Malaysia in search for others like them. Because God knows, living as a teenager with scoliosis can be a lonely thing.

Come on girls and boys, I hope somehow this reaches you and we'll find one another.