Wednesday, August 12, 2009

The Titanium Implants

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

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

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

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

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

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

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

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

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

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

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

Friday, June 12, 2009

Treating Scoliosis With Body Brace

Here I'd like to share my experience as a Malaysian teenager who had to wear braces for nearly 24 hours a day everyday for nearly three years (from 1992 to mid 1994).

Unfortunately there are no pictures of the braces. If I recall correctly, four different braces were custom-made for me in that period of three years. Being a typical problematic (Asian?) teenager who was in constant denial, I chose never to ask about the types of braces they fitted for me. So till this day, I have no idea what type(s) of braces they were. Hard to believe, I know. In more developed countries (and perhaps nowadays too in Malaysian hospitals), they'd inform you of the smallest details which of couse would include the type/name of the brace you're fitted for.

My first brace looked like this one..

About 10 months later I was fitted for a second brace (one has to go through this because braces are fitted as a teenager's body grows), and it looked a lot like the first one pictured above. And then some time in 1993, I remember being fitted for a brace that looked a lot like the Milwaukee Brace pictured below.

And the fourth (and last) brace that I was fitted for that looked like this..

From the pictures I've seen, I suppose that fourth brace was a Boston Brace.

All the braces were worn underneath normal clothes. Underneath the brace, I wore cotton singlets to absorb perspiration and to minimise discomfort caused by the rubbing of the braces against my skin. The braces were always worn very tight. As tight as one can tolerate, I suppose. To this day I have a few lines (permanent indentations of some sort!) around my waist and hip areas caused by the wearing of braces. My Mom used to make light of things and tell me that the braces were like my very own personal "corsets".. they'd make my body nice and shapely, and keep the tummy flat too. I used to giggle in the beginning when she said that. After more than two years of braces-wearing, you bet that it wasn't too funny anymore. The "corsets" became more like my personal prison.

And don't get me started on the fitting-sessions. Every session was a nightmare I would rather forget. Unfortunately.. one doesn't forget those things.

Just remember.. what does not kill you really does make you stronger.

Only God knows how humiliating it was for a teenager to stand there naked amongst male technicians and have her body wrapped up in some kind of gooey clay-like mold in order to make the exact "mold" / "model" of your body, and this mold is what the technicians will then use to make/create your very own customised brace. Till this day I wonder.. how come there were no female technicians..?

In UH (Universiti Hospital) where I was treated during those years, not even one female was in that room with me. I never failed to feel as if I was entirely alone, fending for myself. Sure, Mom was in the next room waiting for me, but in that room where the technicians take the mold of your body, surrounded by other people's molds of various body parts and half-finished braces for various parts of bodies for various treatment purposes... FREAKY and SCARY are the words to describe it all. It was NOT easy on the mind and soul.

My last fitting for the Boston Brace was different. No body mold was taken. The brace was fitted directly onto your body, much like the picture below.

If I had to choose, that Boston Brace was definitely my favourite brace because I didn't have to go through the humiliation of stripping naked and have my body mold taken again. Plus it was the lightest brace I ever had, and it didn't look too obvious once you have your clothes on.

In my case, the braces didn't really do any good. My curves progressed anyway, and still running from my illness rather than accepting it, we didn't opt for surgery until I was 23, in 2002.

Still, if I had to do it all over again, I wouldn't change a thing. I know the doctors did the best they could (considering back then there were very few places treating scoliosis, doctors were limited and the doctor-patient ratio was ridiculous), I did the best I could, and let's not forget.. my parents did the best they could. The sad fact was that we chose to live in denial. We didn't look into other options, and we didn't try to learn more about Scoliosis and its treatments and what would happen as I grew older. Those are my mistakes and I've had to face the music and have the surgeries done in the end.

I hope one day others will come forward and share their stories about the treatments they went through. And maybe one day we can be there for other young ones who has to go through the same sort of nightmare we went through. Except maybe, just maybe it can be different for them because someone will be there for them, to hold their hands. Or simply just to be there.

My dreams are huge and sometimes it feels like time is my enemy! So much to do, so little time. Life and family takes so much time and here I am trying to figure out a way to give a little back to other scoliosis patients.

Monday, June 1, 2009

HUKM Specialist Centre

This was where I had both my surgeries and this is the first stop for me in my attempt to reach out to specialists and patients alike in my hopes for a scoliosis support group. The only problem is that it is always a tad difficult to get through to HUKM phone lines. Oftentimes noone would answer its main line. And with the specialist centre, I think they changed their numbers recently and that's why I've been having difficulties reaching them. But I will keep trying. After all, I've waited nearly 19 years for this. The idea was always there, but studies and work always took up most of my time.

I am positive I'd get the opportunity to see Prof Mat without much difficulty. He always makes time for his patients and would see me whenever I stop by to say hi (whenever I'm in the neighbourhood). The only issue here is to find out when his clinic day is at the HUKM Specialist Centre because that is the best place to catch him face-to-face.

My next focus is the "marketing" aspect. How to inform people of this blog and how I hope to gather Scoliosis patients together for an support network. Am in the process of working this one out and will update on this soon.

Wish me luck, everyone. I hope this idea will really take off and materialises itself.


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.

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.