Thursday, December 25, 2014

Sharing my story hopping that I could help others

Some people asked me why I clutter Scoliosis inside “My Birding Field Trip”?

My answer

Birdwatching is my passion, Scoliosis is in my gene. There are part of me. 

By sharing Scoliosis my real life story, I hope that I could touch, change and help another scoliotic. 

If you are sourcing info related on “scoliosis” and unintentionally we meet virtually. Well let me tell you. If you have scoliosis or your close one have it. You are not alone. Your child is not alone. 

Friday, December 19, 2014

What is Scoliosis? How should it be handle

Photo contribute by spine unit of PPUM

You will able to see this series of scoliosis awareness posters when you walk around PPUM (Pusat Perubatatan University Malaya) and UMSC (University Malaya Specialist center).  If you really looks at these posters attentively you will able to feel that these series of poster has a voice.

Scoliosis is a Greek word that means “crooked”.

Why people have Scoliosis (the lateral curve of the spine.  The abnormal C curve or S curve)?
  • Unknown --- Therefore it is called Idiopathic scoliosis.  Idiopathic scoliosis is a genetic condition.  Scoliosis normally runs in the families.  Parents have it, grandparents, aunties or uncles have it and it pass down.  For me, two of my close relative have this and they are from my paternal side.  Sometimes it might skip a few generations.  Tracing down who has scoliosis in your ancestor line might get your mind bongos sometimes.
  • Sickness ---Could be resulted from some genetic disorder/sickness that effect the muscles, bones and nerves.  Examples are Muscular Dystrophy- muscles are too week to support the spine.  Neurofibromatosis – genetic disorder that cause tumors to grown in nerves.  Brittle Bones disease - the genetic bones defects that cause fragile bones. The sufferer’s bone can fracture easily.  Because of weak bones, the spine vertebrate could not form normally. 

How long scoliosis already existed in human history?
Have you ever read The Hunchback of Notre-Dame a classic novel by Victor Hugo published in 1831?  Inside this classic novel there is this one character a man name Quasimodo.  Quasimodo is hunchback, stunted in body build, very deformed man.  He is being shun and despise by the public. People view him as monster.  He is deformed since birth.  In modern medical term he has early onset scoliosis.

What is the level of research/cure we have achieve so far?
Until to date scoliosis is yet to cease from human like leprosy.  Researchers are still working hard to studies the correlation of genes, nerves and muscles.  Till to date there is no medicine/vitamins that we can take to reverse or prevent it. However researchers are progressively develop more and more advance treatment to keep the curves from getting worse and help to straighten the spine to the safest level.

Should you leave your scoliosis untreated and not monitor by spine doctor? Ignore the spine doctor advice?
Photo contribute by spine unit of PPUM
NO! I have watched my close relatives untreated and un-monitored scoliosis curve progressively deteriorate over the years. You may be like them have successfully conquered your mind to accept body deformed/disfigured as part of your misfortune/fated to be. However you still unable to escape from some forms of health issue cause by progressively larger scoliotic curve. Over the years as the curve progress it will diminishing the functionality of the internal organs as the curve is crushing down on them. Eventually the person experiencing pain/discomfort/soreness that will affect daily life.  Pain/discomfort can easily get relieve from pain killers, however the spine curve could cause respiratory, heart, bladder, stomach, neurological and some other kind of unexplanatory problems.  If untreated the person will daily suffer in pain and then eventually lead to early death.

Corset or bracing can cure scoliosis on adult

Many still unable to accept the reality of medical help.  Deep down from my heart “I am glad that I lives in this modern medical technology whereby my spinal deformities has help.”  In the 5th century BC Hippocrates comes out with the idea of a very torturous methods for treating scoliosis. 

Strapping the patient to a ladder with their head downward and pulling them up vertically and then dropping them down with great force. This is to create a sudden force gravity pull hopefully able to put the dislocated vertebrae back to alignment.  

Those days I always imagine that if I lives in the ancient times people including my parents will think that I am demonic due to my disfigured body. People may stone/burn me to death.

Renaissance Ambroise Pare the French barber-surgeon (1510 – Dec 20 1590), has a period of time serving as a surgeon in the war.  He has come out with the ideas of artificial limbs to help the war time wounded soldiers.  Along in his career he is also the first person who invented bracing for scoliosis. He conclude that irony corset that he developed will/may help in children but once they have turn to mature skeletal he recommend to use the traction method of Hippocrates.
“ParĂ©'s seventeenth book includes a treatise on scoliosis in which he recognizes the female preponderance. He was the first to describe congenital scoliosis, but in cases of later onset he included among probable causes trauma, poor posture, and in girls the use of bodices and the requirement to curtsey.5
For adults with scoliosis he recommended the Hippocratic treatment involving forcible horizontal traction,5 but for children he was the first to prescribe iron corsets:
'... they should wear fine iron corsets with holes in so that they are not too heavy, and they will be so well fitted and padded that they will not cause any injury. They would be changed often if the invalid does not achieve the three dimensions. And for those girls who grow, it would have to be changed every three months, more or less as necessary: for otherwise, instead of doing good, it would do harm'.”

Alternatives method to cure scoliosis?
                                  Thoracolumbosacral Orthosis (TLSO) (hard brace)

SpineCor (the soft brace)
Bracing this non-invasive treatment is meant for children where their curve is < 45 degree.  Once their curve touch 45 degree it is wise to start planning for surgery. Some children during their prime growing stage their curve can increase rapidly.  Please do not knock on the spine doctor clinic at the brim of time whereby their curve has progress until they are terribly disfigure. The thought of hopefully their curve will reach stability and the curve will not increase when their have reach adulthood is a wishful thinking.  I have watched under my own eyes how mine and two of my close relatives’ scoliosis curve increase slowly over the years. From moderate severe ... and now to very severe..

It is still wise to address the curve before other kind of health issue arise and if surgery is recommended then take it before more vertebrate need to fuse. The more vertebrate need to fuse more flexibility are lost. Some scoliosis patient are not like mine, yes indeed my scolio start to erupt out from my spoilt genes when I am about 8 – 10 yrs old.  When I am about 11+ with a pair if observant eyes you can noticed that I have scoliosis but my curve progress slowly.  I was not send for bracing due to my parent lack of knowledge/awareness on scoliosis during my growing up days. I also miss to arrest my scoliosis curve during the “golden time” whereby my spine bones is less rigid because my curve has not touched 45 cobb degree in my teen. 

In my 1st clinical appointment with my spine doctor (Prof Kwan) on 30th Dec 2013, I was so relieve got to know that spinal fusion for scoliosis is still possible for adult with the condition of good health condition. My fatal risk is still less than 1% but unlike the teens I have additional 10% risk due to spinal implant failure. This 10% might or might not appear.  To me it is a good gamble. I surprise my spine doctor because I quickly told him repeated my statement few times “Yes. I agree for surgery, No need to discuss with parent.. I am old enough to decide what I want for my life and body”.  

It is ok to lose a very negligible flexibility cause I need a few more titanium  screws for my more rigid vertebrae  and I need to be lock till L2 even though I may have the same 60+ cobb “C” curve like those young teens. 

When I ponder back, I began to understand things happen in my life for a reason. My long suffering of untreated scoliosis is for me to know and experience from painless to soreness/discomfort, the meaning of low self-esteem due to body disfigured, sadness, worry and etc.  All these allow me to be the living testimony to relate my life experience with another scolio patient who is deliberating for surgery even though spine doctor has recommend it.