#throwback My Scoliosis journey.

YOU just discovered you /your child have scoliosis? You or your child is not alone. There are 1 out of 40 people are inflicted with scoliosis. Scoliosis is not bound by race, gender, age, body build and geographical location. Among the most common myths about scoliosis are cause by school bags, wrong sleeping/sitting posture, due to fall and lack of calcium.

This is my real life stories. I am having Adolescent Idiopathic Scoliosis, confirmed having it since I was 11yrs old. As my curve does not worsen rapidly that I required surgery ASAP during my teens, so most likely I “have longer years of experience than you/your child on scoliosis”.

I am sharing my real life experience hoping that I could inspire and help another scoliosian out there. I also hope that I am able to convince those who are having scoliosis since young and never got treated right up to adulthood that they should get their scoliosis curve monitor periodically by a spine doctor. It is also a myth that scoliosis curve will never progress once you are an adult.

Denial/couldn't care less attitude for some of the sufferers will eventually end up “you miss the boat”. It will be a very sad situation that all spine doctors that you can find are unable to help you to correct and prevent your super-duper severe abnormal spine curve from worsening. You are then left with the only choice of continue to wait and watch your abnormal spine curve keep progress. Your internal organs are failing one by one due to the curve compression. Daily pain that will affect your daily lives is growing and maximize by days. When the abnormal curvature cause nerves compression the person will have pain, numbness and tingling sensation.

This is like you are in the drowning situation, you keep struggling with your hands and legs to keep your body float up. You hope that there is something for you to grasp so that you can keep afloat because you are too tired but there is none. Your lungs are gasping for air. You scream for help.. “Please help me..I am drowning!!! Please Help !!”.. People at the other end the only things that they can do is folding up their arms watching a devastating, horrifying and gory scene cause they could not reach out to you.

You might opt for the alternatives solution seeking help from TCM practitioners ,Schroth, Orthotics shoes, chiropractor, acupuncture hoping that the abnormal curve will reverse. The actual fact is there are not medically/scientifically proven to correct the abnormal spine curve. Out of desperation for better health, it is very normal people will try anything even believe and trust psychic healing such as witchcraft.

My parents have the perception that scoliosis is all about dealing with “Ugliness” and this abnormal curve will stop worsening once I obtain adulthood. So to them, my “Ugliness” can be hide/cover by oversized clothes. Well, can't blame my parents cause many people out there even a GP (normal clinic doctor) also think that Scoliosis/abnormal curve will not get worse/progress further once we are done with puberty. STOP BELIEVING. THIS IS NOT TRUE.

Usually being an “outsider” even our parents could not understand our struggle. Furthermore, children usually couldn't articulate well on how they feel. This will lead to many parents who has a severe curve scoliosis child feel very skeptical about seeking proper medical help for their child. Why need ? She/he has no pain.

My series of thoughts and feelings in journey of life being a scoliosian

When I was 7 – 8 yrs old. Every time my simple cold/flu would develop into Bronchitis . Each visit to that clinic, the doctor would order a chest x-ray to further diagnose my lungs condition. There is when I noticed my spine at the chest level (thoracic) is not ruler straight.

I FEEL CONFUSED. WHY MY SPINE IS NOT STRAIGHT?

When I was about 11yrs old, there is one occasion I fall sick with flu. My lungs are much healthier now compare when I was younger. My mum brought me to consult a young Indian doctor who operates a clinic in our village. He discovered that I have a “weird back”. He advises my mum to pursue further diagnosis by bringing me to GHKL. He said that eventually I need surgery.
I WAS FEARFUL WHEN I HEARD OF THE WORD SURGERY.

I overheard my parent discussion. My father decides and concluded that there will be  NO matter what no surgery. Spine surgery is very risky... . I AM SO RELIEVE NO NEED TO GET DRAG TO THE HOSPITAL FOR SPINE SURGERY. 

My back is uneven. I am having difficulties to find a proper position to feel my back comfortably hold by a chair.
I FEEL AWKWARD.I FEEL AS IF I AM THE ONLY ONE HAVE WEIRD BACK IN THIS WORLD.

When I was 24 yrs old. It was my first time consult a doctor on my “weird back”. He told me that my curve is C curve. That day it was my first time being introduce to this ancient greek word scoliosis(curve/bend). NO cure.. No medicine. The curve will continue to progress. Your lower spine over the years will curve to compensate the top curve.. As your curve is 45° .. Since no pain on your heels, your case no need surgery but come back to see me two years from now. I need you to learn those physiotherapy.
MY LIFE IS DASH.. MY WHOLE LIFE GOT RUIN BY SCOLIOSIS..

Huush is all this bending here and there effective? I could not find time to do them. There is no one willing to assist me on the physiotherapy at home.
I HAVE NO TIME FOR PHYSIOTHERAPY.

When I look at others back. Oooh how I wish I am like them. I wish I can wear bare back dress. Even my swim costume does not fit me well. There is so many air pocket due to my awkward uneven back. It is not because I am overweight. I am only 40kg that time.
I WISH HAVING SCOLIOSIS IS NOT ME. I WISH I CAN WEAR BARE-BACK DRESS.

Since there are no pills to cure scoliosis. Am I under a bad curse? What had my ancestor done? Why me? Why I have bad weird back? Please pray get the curse out of me. Am I demon-possess?
AM I UNDER CURSE?

Photo take from https://godinthebeginning.wordpress.com/2013/06/24/passing-sins-down-to-generations/

No cure? A friend told me Tui Na the Chinese Traditional therapeutic massage can do the reversal of my spine curve. Each week three times I went. The massage therapist presses my ribs.. twist my arms, press my spine. Very painful. My $$$ drain out. Each time after treatment, when I lie down on my bed it is as if I am lying down on nail spike bed.
I went to consult chiropractor hoping that they could reverse my abnormal curve. He shakes his head. He said he cannot help me.
I AM VERY DESPERATE TO RUN AWAY FROM SCOLIOSIS.

I more sadden by this. I spend more days crying. Tears just drop down from my cheeks when I ponder of the uncertain future. I know the facts that eventually I will be paralyzed and bedridden. Spine is all dealing with nerves.
I HAVE NO HOPE. PARALYSE AND BEDRIDDEN ARE WAITING FOR ME.

I told those man who crosses my life junction. There is no future for me. Eventually, I will paralyze. I don't think so you can accept this fact.
I AM THE MOST UGLIEST DUCKLING. I HAVE NO FUTURE. MY FUTURE IS DOOMSDAY. SO DON'T JUMP INTO MY BANDWAGON AND I WISH NOT TO DRAG YOU ALONG TO MY DOOMSDAY.

I don't like any candid shot/any photos taken that show my deformities.
I HAVE NO SELF-CONFIDENCE. I HATE MY BODY.
COULD YOU HAVE EYES ONLY TO SEE MY INTERNAL BEAUTY?

I pray with tears running down from my cheeks. Why me? Have I done anything wrong that YOU want to punish me? Is it because my ancestor is under the curse? You are unfair GOD. Look people out there they all have nice back but not me.. There is a period of my life, I feel that GOD is a liar..
I HATE GOD. GOD YOU LIE TO ME. GOD WHY ME? IF YOU ARE REAL, COULD YOU RE-CONSTRUCT MY SPINE OVERNIGHT WHILE I AM SLEEPING?

My abnormal spine curve subtly destroying me day by day. Same like any others Adolescent Idiopathic Scoliosis sufferer started with no pain. Eventually after a very long year back soreness, pulmonary and gastronomic issue, leg weakness and others unexplained weird symptoms slowly crept it.Numbness in my hand is more frequent now. I could not sleep on my left side. I will have sudden waking up from my sleep and I am scared cause I have no sensation on my palm.
I ADMIT I NEED HELP. WHERE IS THE HELP?

My activity friend told me very frankly that my body posture is worst than she first saw me years ago. The “air pocket” on my left back is getting bigger. My back could not feel my car seat.

I KNOW THAT MY SCOLIOSIS CURVE IS WORSENING.

I am drowning. Scoliosis is drowning me. Trying to destroying me. I scream for help. People just stand there and watch. Can you help me? Who can help me?
I AM DROWNING..HELP!! HELP!! HELP!!

Occasionally as I flip through the newspaper occasionally I saw a teenager seeking for medical funds for scoliosis surgery. I am no longer a teenager. I miss the boat for medical help? I MISS THE BOAT ?

I have witness the real life slow motion horror scenes where my close relative choose to deny that abnormal curve is not an issue. Curve continue to progress. It progress more rapidly in aging. So much pain and suffering my close relative have to endure. Bed-ridden... hospitalize for 5 years prior to death. I don't want to be the main actor in that horror scenes. What should I do?
I DON'T WANT TO GET BEDRIDDEN/PARALYSE DUE TO SCOLIOSIS.
I search the internet for non invasive treatment for scoliosis since I thought that medical help is not possible for me. I diligently do all exercises. I use my office gym facilities to perform the stretching exercises, monkey bar.
I AM WORKING VERY HARD ON EXERCISES TO GET RID OF YOU SCOLIOSIS!

Discomfort, soreness is building up. I need to lie down on flat ground more often when I work for long hours in the office.
I HAVE DAILY DISCOMFORT. IS DEATH GETTING VERY NEAR? AROUND THE CORNER? WHICH ONE IS NEARER DEATH OR LONGER SUFFERING?

MY JOURNEY OF SCOLIOSIS SURGERY

Finally on 30/12/2013. I consult a spine specialist.

I AM VERY SCARED. I AM VERY COLD. I SHIVERED WITH TEETH CHATTERING. HMMM MAYBE MY SPINE CURVE IS TOO COMPLICATED FOR DOCTOR.

HUH WHAT? CURVE 60° NOW? NOT STAY PUT AT 45°? SUCH A RELIEVE MY SPINE DOCTOR EXPLAIN THAT SURGERY IS STILL POSSIBLE FOR GROWN UP ADULTS. PREREQUISITES CRITERIA IS GENERALLY HEALTHY.. YES I HAVE THIS IN STOCK.

Relatively adolescent Idiopathic scoliosis surgery is safer now. Only 1% fatal with 10% chances of implant failure.
WOULD I BE THE UNLUCKY ONE? WHAT IF... WHAT IF? I NEED TO FIND OUT MORE INFO FROM THE INTERNET. HOW IS THE RECOVERY? WHAT DO I EXPECT FROM THIS OPS? POST OPS DAY1 .. DAY2 ? AND BEYOND? ANY SIDE EFFECT OF THE SPINAL IMPLANT – TITANIUM? HOW MANY SCOLIOSIS SURGERY EXPERIENCE MY SPINE DOCTOR HAVE?

Be practical- I wrote on my FB page on 30th Dec 2013. In the meantime I need to consume vitamins to build up my body to get ready.....
I NEED TO KEEP MYSELF IN GOOD HEALTH. NOT TO ALLOW MYSELF EVEN TO HAVE SORE THROAT ON THE DAY OF ADMISSION.

Situation let me know that I need GOD.
I PRAY .. DEAR GOD ...YOU NEED TO BE THERE WITH ME.. I AM SCARED.

  Photo taken from http://the-standard-of-truth.blogspot.my/2012/05/pray-he-can-hear-you.html

On 5th february 2014 I wrote an email with the title “TOM... I am scared”
I UNLOAD MY THOUGHTS, MY FEAR TO MY CHILDHOOD FRIEND.

On the admission day - 17th february 2014. I posted this in my FB page.

我已经打开的窗口准备迎接明天的太阳。(I've opened the window in anticipation to meet the tomorrow's sun). - mentally I am well prepare.

IN THE HOSPITAL I ASKED MYSELF “AM I IN THE RIGHT PLACE? HMMM... CAN I TRUST MY DOCTORS TO DO THE JOBS CAUSE I WILL HAVE NO CONTROL AS I WILL BE IN FULL GENERAL ANESTHETIC ? I FEEL LIKE I WANT TO RUN AWAY.  SHOULD I RUN AWAY OR SHOULD  I NOT?  EEEH NEE.. MINO MORE.. 

During the Preoperative assessment, Pre-operative briefing by the 1st surgeon. I hear rumbling sound. I am very sure it does not comes from me even though I am fasting.

This gives me an impression.
MY DOCTOR HAS A GREAT SENSE OF OWNERSHIP ON HIS WORK. HE PRIORITIES WORK HIGHER THAN FOOD. Hmmm... I CAN TRUST THIS DOCTOR.

There is so many test I need to go through, eg blood test, blood pressure? Xray and Somatosensory evoke potentials (SSEP's).

SO BUSY.. MY NERVOUS INTENSITY IS BUILDING UP AS THE TIME IS DRAWING NEARER FOR ME TO ENTER TO THE OT ROOM.

Unlike driving the driver has the full control of the steering. For surgery being the patient, the only things we can do is to be willing and the rest leave it to the surgeons. NEVERTHELESS TO ENSURE A SAFE SURGERY AND RECOVERY AS A PATIENT IT IS VERY IMPORTANT NEVER HIDE ANY MEDICAL CONDITION EVEN THE SLIGHTEST  FROM YOUR DOCTOR.   I even told my doctor I am a pre-mature baby.. suffering from bronchitis whenever I have flu/cold. I slip and felt last December..  My right pelvic has soreness.  I show my doctor which spot on my back is painful whenever I press on it.  In my opinion my elbow looks abnormal (over extended)  compare with normal people. 

I SANG QUER SERA...SERA.. WHATEVER WILL BE WILL BE.. (when the nurse push me to the operating theater).

I HAVE NO CONTROL OVER MY SURGERY?

I told my spine surgeons I am looking forward for life after ops.
PLEASE MAKE SURE I CAN WALK.. I WANT TO GO NEPAL.. I WANT TO SEE VULTURE. I SET MY GOALS. I LOOK FORWARD FOR LIVING..

After the ops, my doctor woke me up announced to me that I had a successful surgery.

My mind has this thought.
IT IS HARD TO BELIEVE I REALLY HAD UNDERGONE THE SURGERY. DOCTOR YOU DON'T LIE TO ME. IS IT REALLY TRUE? OR DID YOU STITCH ME BACK AFTER YOU DISCOVERED HOW COMPLICATING MY SPINE IS? I DON'T FEEL PAIN. I DON'T FEEL COLD ANYMORE UNLIKE THE TIME I ENTERED THIS PLACE JUST NOW.

Back in the ward. Pain and discomfort on my back start to kick in. Uneasiness that I could not describe in proper words.

GOOOSH .. IS IT WORTH THIS SURGERY? THIS IS AS IF I AM THE PATIENT IN THE MEDICAL DRAMA. I HAVE SO MANY TUBES HOCK UP ON ME. NURSES CAME IN EVERY HOUR. IS MY SITUATION CRITICAL?

I use my hand to touch my rib hump on my left.

Aaaargh IT IS STILL THERE. SAME LIKE A FEW HOURS AGO BEFORE I ENTER TO THE OPERATING THEATER.

--- actually I am just impatient. It will get adjusted overtime as we recover.

CIZ...THIS PAIN IS NOT SO HORRIFYING AS MY SURGEONS DESCRIBE DURING THE BRIEFING.--(VERY PAINFUL … LEVEL 10 IN THE CHART). FOR ME THIS PAIN IS BEARABLE. IT DOES NOT MAKES ME YELL ,SCREAM NOR DROP ANY TEARS.

Huh.... is this really me? My back before and this is after ops? So amazing..I hardly could believe this doctor..

I WAS OVERWHELMED WITH JOY, WHEN MY SPINE DOCTOR SHOW ME BEFORE AND AFTER OPS.

Positive mind.
I THINK AND BELIEVE THAT PAIN/DISCOMFORT WILL REDUCE IN THE NEXT HOUR.

1st day post ops. Patient need to sit up for the 1st time post ops after all the tubes are being removed. We are encouraged to walk.
I FEEL VERY HEAVY CAUSE I HAVE BEING INSTALLED WITH IMPLANT. PHYSIOLOGY EFFECTS –

1. ADDITIONAL WEIGHT SUDDENLY.
2. I  AM LABEL FRAGILE HANDLE WITH CARE- SCREWS WILL LOOSEN.

Huh? Why this wash basin is lower compare to yesterday?

I DON'T FEEL STABLE. THINGS SEEMS TO BE AT DIFFERENT HEIGHT.

I had severe vomiting – yellow/green vomit due to general anesthetic and morphine side effects. As my stomach muscle squeeze and push out the contents out through my mouth, the vibration of body leads me to have the thoughts of ...Gosh the screws will get loosen.

FEAR OF IMPLANT FAILURE. SCREWS GOT LOOSEN.

In my initial recovery.

I FEEL VERY TIRED. I JUST WANT TO SLEEP. MY BODY SEEMS TO HAVE DONE A SUPER-DUPER HEAVY TASK.

NEVER EVER IN MY LIFE I FEEL SO HELPLESS AND WEAK. I COULD NOT HAVE THE STRENGTH TO HOLD EVEN A PLASTIC CUP FILL UP WITH WATER.

My journey back home.
IT WAS THE MOST TORTURING LIFE EXPERIENCE. MY BACK IS VERY SORE.

I eat proper diet – ensure adequate vitamin C, protein, iron and calcium. Have a lot of bed rest, do sit and stand exercise and walking (to strengthen my core muscles).

RECOVERY IS THE PATIENT RESPONSIBILITIES.

3rd March 2014 I wrote on my FB page

Greetings to you from this patient who is recovering well after spinal fusion.  I am waiting anxiously for Doc to certify that I am fit for office.

I HAVE POSITIVE ATTITUDE

In the initial recovery I am fully awake with open eyes did bed turns during my sleep. In the initial recovery there is always a few seconds “electric shock” sensation that cause me to react “Tsssk.....Tsssk”. I also have slight numbness and soreness between my shoulder blade. FYI this soreness lessen and wears off as I recovering.

I PAY MORE ATTENTION TO MY BODY

Back to office experience I wrote this on my FB page.

“Good Morning!..If you guys have nothing to be grateful and thankful..

Well I am very grateful to God who use spine surgeons to enable me to feel the back of the chair when I sit down”

I AM GRATEFUL AND THANKFUL THAT AFTER THE OPS WHEN I SIT DOWN ON A CHAIR I COULD FEEL MY BACK SUPPORT BY THE CHAIR.

Occasionally I do secretly wish that I had my Scoliosis surgery much earlier so that I could have a much better correction. For this I discovered that many scoliosis patients also have this post ops satisfaction score decrees syndrome.
POST OPS SATISFACTION SCORE DECREES SYNDROME . NEED TO KEEP REMINDED THAT SCOLIOSIS SURGERY IS NOT COSMETIC SURGERY. THE OBJECTIVE IS TO PREVENT/AVOID INTERNAL ORGANS GOT COMPRESS AS THE CURVE WORSENING.  MANY ANGLE THAT A SPINE DOCTOR NEED TO CONSIDER .. OVER CORRECTION ON THE SCOLIOSIS CURVE PATIENT WOULD GET IMBALANCE BODY.

It is not a done and close file for my scoliosis once I have undergone the surgery. 

LIFE BEYOND WITH MY NEW SPINE IS MY RESPONSIBILITIES.

On April 17th April 2016 @ 8.25am I wrote this on my FB page.

Aaaarrrgh… Aarrrgh… my head arrrgh.. Do you know something? I got hangover effect not because I had liquor last night but I was working till 3am+ while you guys are comfortably tugging yourself cozily in bed.

Despite that  I wake up early.  You may wonder why wake up so early then? Because I need to do swimming at about 9am. I will be doing my usual 600m swimming session.

FYI by profession I am a DBA in a financial institute to earn my living. I am struck with #scoliosis since I am about 10 - 11yrs old.  No I did not had a car accident nor I had a bad fall that cause me to have this.  

I undergone the scoliosis surgery as an adult patient 2 yrs ago. I am recovering well. I am a much healthier and happier person compare to before.

I am doing swimming … swimming… and swimming very often ever since 4th month post ops. Why I need that?

Cause I am fighting against and resist DDD (degenerative disc disease) on my unfused few spine vertebrae.  I want to protect them against DDD cause I know and I read that many scoliosis fusion patients 10 years after surgery need another surgery because without proper core back exercises wear and tears set in.

This is due to we have less shock absorbed distribution capabilities on our spine as a big chunk of our vertebrae need to be fuse up to solve our severe and life threatening scoliosis curve.

I will continue to #fight cause I don’t want to be like them.  Back pain after 10 - 15yrs post ops.  I want to continue to have good and quality life post ops wef 17th Feb 2014.

#‎fighter‬‪#‎determination‬#scoliosis

SCOLIOSIS I WOULD NOT LET YOU CONTROL AND DESTROYING ME, BUT I WILL TAKE CHARGE TO CONTROL YOU !!!!

NOTE..
Before my scoliosis surgery beside have mild soreness on my back, I also have mild breathless symptoms and gas trapped in my intestine. I am all grateful and thankful to GOD for this scoliosis surgery has lifted those away and also given me a better body posture, a better quality of life.

“Who am I ? That the GOD who cares to know my name. Would cares to feel my hurt. I remember when I stumble and my strength is almost gone.

Every tears I cried ..YOU hold it in your hands

I praise you GOD cause you are with me guiding me out from this storm.”