Friday, March 5, 2010

Of Hopes and Dreams of a Scoliosis Patient

Today I finally managed to see Dr. Azmi of HUKM at Pusat Pakar HUKM. In reality I realise there is little need to see the doctors now that the implants have been taken out and I've gained full recovery. But to appease my ever-worried parents (and spouse), I chose to go over, at least for a chat.

And of course, there is that main underlaying reason that has been nagging at me for years. The hope and the dream of building a support network for young Malaysian with Scoliosis.

In hopes that they would not feel alone and know there are many others out there like them. In hopes that one day Malaysians would be aware of Scoliosis and respect (and understand!) those with this condition. In hopes that one day no young person has to go through what I personally went through as a teenager with Scoliosis.

The man who had skillfully operated on me and changed my life, Professor Muhamad Razak, does not hold clinics anymore. So off I went to see Dr. Azmi, the man who was there for my second surgery (implant removal) back in 2008. And here I will unabashedly admit that Dr. Azmi was also the man who had to tolerate my blabbering nonsense of chaos and panic back in that brightly lit operating theatre, as all my inner demons had surfaced then and reared their ugly heads.

We had an encouraging chat. The good doctor is supportive of the idea for a Scoliosis Support Network. I am hopeful that one day soon it will become a reality.

I am told that there is no need for an annual check-up, no need for anymore x-rays, no need for anymore physiotherapy, as long as I experience no pain on a day-to-day basis.

I very nearly got a lump at the back of my throat which had to be swallowed back (hard) upon seeing Prof Mat's scrawl of "Fully Recovered" right there on the last page of my file. If you've gone through 20 years of scoliosis treatments, pains and problems as I did, and I'm sure many of you out there did.. I'm sure you'd understand that there are moments when triumph and gladness can cause those lumps-at-the-back-of-your-throat to occur :)

Praise God. Dare I say that after 20 years, I can now live as normally as any other ordinary Jane can. Live without the fear of the curves digressing, without the fear of further surgeries, without so many nagging fears that I'd rather not go into right here, else I'd sound like a constantly whining ungrateful witch.

This blog had always been about my personal experience, and yet thus far I'd restrained writing in a very personal manner, as an attempt to stay objective on the subject of Scoliosis.

But lately I've realised, there is no separating Scoliosis from my personal emotions and wellbeing. Scoliosis is in you, it makes you the person that you are because you live your whole life with it and you can't run away from it. If you're a scoliosis patient, scoliosis is you.

This is not a site of a medical expert. My opinions are shallow and from the perspective of a Scoliosis patient, 31 years of age, first diagnosed with Scoliosis at the age of 12.

I will continue writing on things that are relevant to all Scoliosis patients out there, in hopes of reaching out through sharing of information and personal experiences. And I hope those of you out there will share your experiences with me as well.

Because this can be the start of something great.

4 comments:

Jessica C said...

Hi there,
It's very encouraging to hear that you've finally recovered from scoliosis & that u went through 2 major spine surgeries as well!
My sister was diagnosed idiopathic scoliosis at age 14, lucky for her that her dr recommended us SpineCor the soft brace that can be worn under clothes & is not hard & rigid like the Boston brace. It pains me to see little girls in hard braces when we were in UM once for their scoliosis clinic. I hope that awareness for scoliosis among parents could reduce the risks of discovering the condition too late & having better chances of recovering with non-invasive treatments like SpineCor.
It's scary for parents to think tht their little girl has to undergo spine surgery?!
Screening should be mandatory in Malaysian schools such as in the USA. But I heard that awareness is picking up in recent yrs, and there is free screening in certain schools. That's good news.

Alas, congratulations to your full recovery and kudos to your courage & persistence throughout the years :)

Nina said...

jessica; thx for your comment :) surgery is indeed a frightening thing, but for some it is unfortunately unavoidable. i agree with you that screening should be made mandatory! maybe some day this'll materialise. there are many doctors out there who are working on increasing awareness of scoliosis, so there's definitely hope yet. here's hoping that your sister's treatments go well and that she wont have to opt for surgery, ever! :)

Simone Icough said...

Hola

I had Scoliosis surgery in 1989 for a 76ยบ curve, I had a plaster cast for 7 months but never had bracing. I have suffered from pain ever since to be honest and I am going to see a new Dr in the UK to see if he can remove the Harrington rod that I have had for 21 years :)

This was not possible until the last few years - but now through networking and support groups it seems I have found the Dr! This new guy was trained or worked with my original surgeon Dr Jackson, also of Southampton hospital.

Good to share stories and come visit us on FB or the website/blog one day :)

Kristina said...

Hello!

First, thanks for writing about your experiences. I have been going through a bad bout of pain this past week and it has helped me so much to read that others with a rod go through it too! I noticed I get more pain when I don't swim regulalrly or if I am going through a stressful period. Swimming, and more. recntly, kayaking, has helped to strengthen my back alot. My massage therapist says that my curves are now barely noticeable because of it. But it is the lower back and hips that express themselves angrily when I am negligent with myself. Now my husband is pushing me to check out a gym with a personal trainer to strengthen my lower back and body so that I can better avoid having weeks like I just had. Perhaps. Nevertheless, I am grateful for your insights. I now know that I am not alone. Kristina