Wednesday, May 20, 2009

My Life as a Scoliosis Patient

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.


Yatie said...

I tak tahu mcm mana the pain was, but with my slip disc , I can feel the pain every day . very not comfy.

mcm mana you gone through all this? very strong lady ..

Nina said...

yatie; thank u for the support, dear. alhamdulillah, i'm lucky to have a supportive family and good friends, plus God gave me a high threshold of pain. i am very grateful for my situation because there're many other patients out there with many problems such as no support system, lack of financial abilities, and ramai lagi yg lagi severe than my case. so i'm one of the luckier ones indeed :)

IbuHaziq said...

hey there,

i must say i cannot imagine how painful it was for you. my backache yg once in a while dtg ni pun is enough to make me bedridden sometimes and kdg2 cm nk nangis.ini plak ur condition. but ur a strong person nina.u'r gonna inspire others im sure....take care ya... ;)

samihah said...

hi. i would like to know more about your experience as scoliosis patient because my sister is a scoliosis patient too. she's 14 years old. we are still thinking what is the best for her. whether to do the surgery or not. i hope you can share more and give some advise. thank you :)

Nina said...

ibu haziq; i hope ure right and i could at least do something by reaching out to others with scoliosis! one day maybe there'll be an opportunity for scoliosis patients to help and be there for one another. now we're all pretty much alone in facing this condition. takde formal support group langsung.

samihah; hi there! i'd be glad to share any info u need. do email me at and i'll get back to you asap. we could talk on the phone or even meet in person if u want. hope all is well with your sister.

aien said...

hi, i hv scoliosis too but never seek doctor for further check. now i'm 21 and realize dat i should take action as i feel my rib cage become more to right side,more than before. i dont knw how to talk about this wif my parents.i dont want they worry about me.n im afraid if im too late to hv a surgery in my age now.btw, u inspired me a lot..tq n take care..=)

zainab hanis said...

hi there.

I'm a scoliosis patient too.
I was dignosed with this problem when I was 13 years old.

I wore the backbrace when I was 14 and I wore it for 2 years before I undergo my corrective surgery 2 years ago in HUKM when I was 16

It has been 2 years after the surgery and I'm doing good.Now,I'm an active 18 years old girl who is currently doing her foundation in Law in UITM Shah Alam.

Proud to be a scoliosis patient,
Zainab Hanis Zulkifli

t a t y t o o t said...

hey sis Nina. i met Dr malek too at Damanara Specialist. Dr tu la yang check taty :)

Intek Knight Alumni said...

mrs yatie....saya rasa saya tahu betape seksanya penyakit scoliosis ini bila kena pada kita,saya pernah bercinta dengan seorang pesakit scoliosis,dea sangat tabah dan selalu depress...tetapi hanya pada waktu tertentu,kadang2 dea lebih tabah dari saya,saya sangat2 respect dea,dan btol menyayangi dea,saya sangat tekad menyayangi dea,dan saya sudah sebulat hati ingin menjaganya sepanjang hayat saya,5 tahun kami tempuh susah senang bersama,dan saya betul2 dedicate myself to her,tapi hajat kami tak kesampaian apabila ada masalah dari keluarga saya yg menyebabkan dia dan keluarganya hilang kepercayaan pada saya,tetapi saya sangat menyayanginya sehingga sekarang dan sampai bila2,sekarang dea cuba buka pintu hatinya untuk orang lain,tetapi saya ambil keputusan untuk tetap menunggunya walaupun dea ambil keputusan untuk mencari orang lain,saya hormat keputusan dea tetapi saya takkan tinggalkan dea kerana saya ingin menjaganya,walau ape pun yg jadi,sekarang saya seorang medical student tahun 2 dan bertekad ingin menjadi seorang orthopaedic dan scoliosis expert,jadi doakan saya supaya jodoh kami panjang,serta doakan saya menjadi seorang scoliosis expert supaya saya boleh menjaganya serta membantu semua pesakit scoliosis ini,even saya ade terfikir jugak ingin membuat satu foundation untuk scoliosis suatu hari kelak,saya doakan supaya usaha kita semua berjaya dalam membantu merawat penyakit scoliosis ini....

Intek Knight Alumni said...

soryy nina,silap plak....

nollyfyenee said...

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I hav post da same thing

Choy HH said...

Dear Nina,

I have a friend who suffered slipped disc & the recent news (a day ago), he was immobilized & in great deal of pain.

Could you help or having any other experts' contact info in which be helpful? Thank you

My email: