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01/07/2013

My Fight with Idiopathic Scoliosis


29 June 2013 is International Scoliosis Awareness Day.  



I want to give you a short info first.



Scoliosis (from Ancient Greek: σκολίωσις skoliosis "obliquity, bending") is a medical condition in which a person's spine is curved from side to side. Although it is a complex three-dimensional deformity, on an X-ray, viewed from the rear, the spine of an individual with scoliosis may look more like an "S" or a "C", rather than a straight line.

Scoliosis is typically classified as either congenital (caused by vertebral anomalies present at birth), idiopathic (cause unknown, subclassified as infantile, juvenile, adolescent, or adult, according to when onset occurred), or secondary to another primary condition.



Secondary scoliosis may be the result a neuromuscular condition (spina bifida, cerebral palsy, spinal muscular atrophy, or physical trauma), or syndromes such as Chiari malformation.

Recent longitudinal studies reveal that the most common form of the condition, late-onset idiopathic scoliosis, is physiologically harmless and self-limiting.The rarer forms of scoliosis pose risks of complications.



Patients having reached skeletal maturity are less likely to have a worsening case. Some severe cases of scoliosis can lead to diminishing lung capacity, putting pressure on the heart, and restricting physical activities.



The signs of scoliosis can include:
Uneven musculature on one side of the spine
A rib prominence and/or a prominent shoulder blade, caused by rotation of the ribcage in thoracic scoliosis
Uneven hips, arms or leg lengths
Slow nerve action (in some cases)

Maybe for the first time I am finding the courage to talk about my fight with Scoliosis. 



I was 6 years old when I was first diagnosed with Scoliosis, I am now 30 something and when I was younger Scoliosis was not as common or medicine-medical science was not as developed as it is now.

I was young and I just started to primary school, kids were so nasty, they were laughing, having fun, bullying me.

I had no friends, they were possibly thinking that scoliosis is contagious. :(

  


In anyways It was a hard procedure. I first started my treatment with physiotherapy when they understood just physiotherapy was not working, I had to wear brace's, with metal buckets. 

Also my shoulders were not at the same level (still not) 

For a year so both by wearing a brace and physiotherapy it prevented my scoliosis worsening. 

After that my scoliosis worsened, I suspect from they concentrated physiotherapy only on the wrong side of my body so infect made the scoliosis worse. 

Wearing brace with metal buckets made holes in most of my clothes, when people asked me why I always had holes in my clothes, I had to put up lies that I made those holes with pins because it is very trendy, and that lie worked within few days most of my friends made holes in their t-shirts.


Brace bruised my hips, it restricted my breasts. 

It went on like this until the age of 12, by using different braces, by doing different physiotherapies 5 days a week. 


But none of those stopped my Scoliosis. So we were in search of good hospital and a doctor. 



We finally found one in Bad Wildungen (Bath of Germany) Werner-Wicker-Klinik. 


It was not easy, they drilled my skull, I had to wear Halo, they put me into a wheel chair, so I could carry weights and they can place rod into my back, I carried weights even when I was sleeping, everyday a nurse put us to sleep and a nurse woke us up. 

We had to woke up early for a morning gym.  

I remember that they took water from my belly(Lumbar Puncture), I might be wrong at the medical terms, please check with your docs.I still do not know why, I guess that they took it to test if there were any other reasons that caused my scoliosis. 

My hospital was so good, both doctors, nurses, the environment, the hospital was build in the forests, so you could always take fresh air. 

I can say this comparing to the luxury of those years my hospital was like a 5 star luxury hotel.

They were doing everything to make you feel at home. 

One day they decided that it is my time to have a surgery. 

It lasted about 6-8 hours, As I woke up as they were taking me from Surgery room to my room in Intensive Care, as I was going to my room, my friend was going in to surgery room. 

As I always mention on my blog, I am a person who can not sit still, I had lots of pain after the surgery, you start to feel the pain as you slowly got out of anesthesia.

As I moved a lot they took me into a temporary brace.  The injections they were giving me caused  inflammation on my legs, when I told it to docs of course they did not believe me. But I asked them to cut it for a week, if there was no difference than I would be happy to continue to injections.

You know what is worse, sending a friend of yours to surgery, waiting for her to come out of surgery and getting the news of her death on the surgery table.

She was 18 years old but she had the body of a 4 year old and an intelligence of a 7 year old. 

I do still remember that day since like yesterday. 

Living with rods is not easy, you have to be careful in every stage of your life. 

After the surgery I had to be careful on every single thing I do in my life. 

I learned to woke up from my bed on balance, I stil use that style to wake up from my bed, or from the sofa when I'm having a nap.

I was not allowed to carry more than a 1kg, Now as a matter of fact I do have to carry heavy items.

After the surgery I was taken into temporary clay braces, only tummy bit was cut of. It was difficult as I was not allowed to shower, I had boxes of hospital sleeves, I was wearing those under the clay brace, finally that clay brace caused wounds on my coccyx, like the big line on my back was not enough...

6 or 7 months after the surgery I have been upgraded to plastic braces, It was a bit easier, than the other braces, but this one had a neck protection, it had a halo on the neck side, on most of my school life all my pictures are with braces, believe me it is still not a happy feeling, I destroyed most of those pictures, I burned them, I suppressed those memories, sometimes they come out from the box that hide them ( talking about those memories) and I still get into tears.

I was alone in the hospital, my parents were both working, mum is a teacher, she had school to go, students to teach and dad is a businessman, had a company to run.

I could not speak a word of German, at the end I acquired enough German to tell my problems, or to ask for something. 

Scoliosis puts pressure on your lungs as the curvature gets more severe.  

If you have your scoliosis at a young age like me, most probably it would affect your height. 
After the surgery I stopped growing. :(

Now I had the surgery, I am much better but, it limited my life, It just opens up wounds in your life and they can not be healed.

Now I am 30 something and when I wear low cut jeans / bikinis/ swim wear it
shows up my scars and people ask what are those?

One day, a talkative lady approached to me when I was shopping and asked what are those scars, I said nothing, they are just wounds, she asked on on and on , you had surgery I know that tell me what, when, why?

Finally I said no I just fell down from rocks, those are the wounds of falling down from rocks,  she did not believe, but I left my shopping basket and ran out of the shop.

This is something that I do not want to talk, I refuse to talk.

I do not know how they prepare you to the surgery or after surgery but I think they need to support us psychologically, with the help of a therapist an expert at those conditions maybe an ex scoliosis patient who later become a therapist or a psychologist.

It is important to get some psychological support. I did not get any support, I was pretty strong, did only cry twice during all those procedures in hospital, I only remember the one When I father was leaving alone in the hospital.

Either you prefer to have the surgery or not to have the surgery, scoliosis can always come back and hit you.

Swimming really helps, as all your body muscles works, it makes your muscles stronger.

Although still swim, I have got weak hand muscles, some experts say, it is not your muscles that is weak, it is your brain gives the orders to your muscles to be weak.

There are many reasons that causes scoliosis, my doctors guessed that I could have Neurofibromatosis, it passed out and turned into scoliosis.

I am not a medical expert, I am just telling you what my doctors said.

It is not easy and they use different cures on different people, I had friends who had halos like me but they were only using it when they were sleeping.

But you can not beat scoliosis like going to boot camps like Biggest Looser.

If you decide on surgery, choose your doctor very carefully, it is important, talk to your doctors previous patients, I am sure you will come across few of them at this office.





I do not know what to say, in away I am glad that I had my surgery but than again I have to live with all those scars on my back forehead and on my head.












My doctor was Dr. Zielke, I do not think that he is working as a surgeon right now but I am sure his daughter is replacing him.


My surgery costed a lot of money, they still call me a Neue Mercedes. As it was as expensive as a new mercedes at those times.

Now I do get back pains, and when I do get back pains I use hot bottles, I take Nurofen Back Pain tablets.

When I walk so much my legs gets weak and shaky.

I can quickly twist my ankles.

It is on and on and on..

But either you refuse the surgery and become a hunchback or choose the surgery have a better life style. Because if you do not have surgery, you will become an hunchback.

I am not being nasty. I am telling you everything that I have gone through.

Just physiotherapy is not enough, not matter how developed medicine / medical science is.

Surgery is the final destination. I had friends who refused the surgery, docs thought that they stopped my friends scoliosis, but she had to go under the surgery 1 year after.

Surgery is hard, you will suffer, but at the end you can live your life maybe not as freely as the others but this won't avoid you to dance, to walk, to go out.



PS: My Scoliosis is not Congenital.
Image sources : https://plus.google.com/s/Werner%20Wicker%20Klinik
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