The Next Step: Spinal Inc., Mont Kiara.

Here's what has been going on..

Since the birth of the second baby, I've had pain on my upper spine and the fear that my curves are regressing have returned to plague me.

So today I had my first consultation with Spinal Inc., in Mont Kiara. The physio doctor I saw was very sympathetic, helpful, generous with advice and information, and I look forward to working on the good ol' spine with her and her staff.

Goodbye to my surgeons? Nope, we will cross the bridge only if we get there. Which I hope we won't. Two surgeries are enough for now. God willing.

Will keep my progress updated.

Having Kids, With Scoliosis

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..?

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

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

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

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

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.