My Experience with Scoliosis

For any of you that do not know what scoliosis is here is a quick description:

Scoliosis  is the twisting/ or curving of the spine away from the middle, creating an S like shape.  Some patients have scoliosis due to a muscle weakness brought on by polio, cerebral palsy or spina bifida; Some are just born with scoliosis and it is due to a formation problem while the infant was developing ; But, most scoliosis patients will be diagnosed as "idiopathic" cases which means the cause is unknown.

If you'd like to read more on scoliosis: Body & Health Canada

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My spinal condition was brought to my attention from a friend. We were in going into grade 7, our final year in elementary school and we were enjoying our final days of summer in my backyard. I had two friends over that day and we were all jumping on the trampoline when one of my friends said "hey, is your back okay?", I was completely baffled - what exactly was she talking about?

My step-dad overheard this and was immediately concerned as he has lived with a bad back for quite some time and knows the hardships of having to live with a spinal injury. He asked me to to get off the trampoline to inspect my back and after a moment he agreed that it did look a bit tilted. That afternoon we went to our local clinic where the doctor asked me to touch my toes and immediately agreed that my spine was crooked and we would be needing to get an x-ray that very day.

Honestly at this point I do not think I felt any fear  over any of this, I was completely confused by the notion that I had a medical condition.  I was completely unaware of the gravity of the information we were told. Some people will say how sad it is that I found this out so young, but honestly I believe it to be a bit of a blessing in disguise because after this doctors appointment I carried on without worry. I was able to forget the troubles and focus on having fun. I spend each day after like any other child would.

 

 

*this is not my photo

After the X-ray results came back we were told my spinal curve was at 48 degrees and I would be needing to see a orthopaedic specialist at BC Children's Hospital. We had been told many times that seeing a specialist could take months since there are so many severe cases, but within only a few weeks we were called in for an appointment. Being called in this quickly left my entire family feeling more than a little nervous, was my case more severe than we thought?

On September 17, 2002 I had my first appointment at Children's Hospital and it was here I met my doctor, Dr. Reilly. It was he who told me that I was incorrectly informed about my x-ray results and that my curve was actually 54 degrees.  He explained that all curvatures higher than 45 degrees were usually passed the point of being corrected by spinal braces and that my only viable option would be to have the spinal surgery. He went on to explain that the surgery meant placing two titanium rods along my spine to straighten it and then fuse the rods in place with screws. I would say this is the exact moment I remember fear setting in. Titannium rods along my spine? Screws? Fusing? Is this a joke?
This was the moment that daunting feeling that came over me - knowing that my entire high-school experience - scratch that, my entire life would have to be lived a bit differently than everyone else. I was completely unable to take in the fact that within just a few hours I went from being a normal 12 year old girl who was excited about graduating elementary school and entering high-school, to a girl who would be spending a majority of her grade 7 year in doctors offices and would be missing her first months grade 8 because she would be retraining her post-op body to normalcy. . 

 

Dr. Reilly was very calm and considerate, he answered all my families questions and tried to reassure me about all my worries. I feared I wouldn't be able to dance again and he promised that he would do his best to make sure I would be able to. I feared I wouldn't be able to run and play with my friends and he told me that only for a short while after the surgery would I not be able to run, but eventually I would be able to play any games they played. I feared that I wouldn't be able to have children and again he told me that I would be able to do anything any other person could do, I would just have to take very good care of myself physically.

 

*this is not my photo

Over the next year there were countless appointments, blood tests, x-rays and of course, there was an endless amount of teasing. My Grade 7 year was not at all what I had expected - I never had experienced teasing quite like this. 

Girls were especially mean. This was the year most girls began straightening their hair, playing with makeup and wearing clothes that no longer sported Mickey Mouse or Cinderella. They were all beginning to take more time to stand out and look feminine & pretty All while they were primping themselves I was taking more time to hide myself. I stuck to my oversized gap sweaters to hide this "imperfection"  but it seemed that everything I did to hide it just made it all the more noticeable. Certain names were thrown around quite a bit, "gimpy"  was one of them that seemed to stick well around my classmates. I know it doesn't sound like the worst name I could've been given but for a 12 year old it was enough to be completely crushing.

When we all finally graduated from Grade 7 all the girls were running around crying and hugging one another. I remember one of my good friends turned to me and was completely baffled that I wasn't upset. She was all bleary eyed and sniffly saying "aren't you sad at all? its all over?!" and I just shrugged - all I was thinking was "I cannot wait to get the hell out of here!".

Summer 2003 seemed to drag on. I was so uncomfortable in my own skin by this point that I spent a majority of the summer indoors, alone, rejecting any offer to go out with friends.  I could feel people's eyes on me every-time I went outside and so why would I willingly subject myself to that?  Go out to a swimming pool for the afternoon? Are you insane?

September 2003 finally rolled around and I attended my first day of high school, Orientation day. Orientation day was the only day of school that I would attend for another 2 months. In our first class, sewing, a girl sat next to me. We got to talking and then spent lunch together. I remember she said "want to meet here again tomorrow?" and I replied "actually no, I won't be here tomorrow. I am having surgery tomorrow". It was such an odd feeling having to tell someone "hey, I'll see ya in two months! Just got to go have some rods put in my back!".

September 8, 2003 was the date of my surgery. By this time my curve had progressed to 84 degrees and the curve was violently disfiguring my body. The night before I spent what felt like hours scrubbing myself down with a strong antibacterial soap that made my skin with a orangey/yellow colour in preparation for my surgery the next day. I really remember every moment of that night and the following morning. It was like an overly vivid dream, I remember everything & I can see it all but it all feels a bit dreamy and unreal. I remember my mum being very worried and I remember watching TV with my brother and my stepdad. I remember going to bed thinking I wouldn't be able to sleep from my fear but I slept fine. I woke up the next morning feeling completely calm. I remember my family asking me if I was worried and I kept saying I wasn't. I remember getting an IV put into the top of my hand into my vein and having a slight moment of panic when I saw the thick IV needle; And then I remember being wheeled into the surgery room and my mum asking me if there was anything I wanted, and oddly enough I said "Mario Party 3 for N64!!". 

Super odd kid, eh? 

 

As soon as I was wheeled in the room and I saw all the buckets of surgical tools the pure wild-panicked/fear began to set in and I started to bawl. Luckily it was at this point that the anaesthesia set in and I fell into a deep sleep that lasted through the next 13 hours.  I can only imagine how scary that image must have been for my mum though, seeing my panic setting evelope me as I was being brought into that room, seeing all those buckets of tools in that room.

My surgery was a total of 13 hours. I had two vertebra's removed, two titanium rods placed along my spine, and 12 screws fused to my spine. Parts of my ribs were taken out to surround the rods which would help them fuse and secure to my spine.  

I honestly couldn't tell you what time of day it was when I woke up in the ICU (intensive care unit). I was highly medicated on morphine and felt completely out of my mind - apparently I had a long ramble about how toque should be spelt "Took" - weird. My family tells me that I was very resistant to waking up, that they were literally having to yell in my face to try and wake me.
After surgery you are incredibly thirsty and they will not give you water - this infuriated me. I had a wonderful nurse though, named "Bryan" who stayed by me and gave me all the ice-chips I wanted, he definitely lifted my spirits; I think about him all the time, his kindness really made such a difference in this groggily painful experience.

**I really have found that this aspect of hospitals is under-valued, really great nurses. I had my share of awful nurses while I was in the hospital but there were two nurses in particular that were absolutely amazingly fantastic. Rivera and Bryan, they joked around with me and were always incredibly supportive. A bad nurse is perhaps the worst thing you can have in the hospital, they are the ones changing the sheets and helping you out of the bed - and if they do not take the time and care needed these procedures can be incredibly painful. I remember two awful nurses that very roughly changed the bedding, and I couldn't move so they are suppose to shuffle it gently from under me, but instead they were incredibly rough. They kept yammering on to each-other about what "terrible days" they were having and I just felt like saying "hey man, this is not my finest day either!"

After a day or so the doctors told me it was about time to get me on my feet and try to walk over to the wheel chair. I do not even know if I can explain to you the sheer pain of standing up the first time after surgery. I felt like my entire spine was going to fall out of my back. I could feel the whole exposed cut on my back tense up as I was lifted to be seated upright. Taking a few steps felt like an 8 hour workout, I was completely exhausted by the time I got to the chair. My whole body ached and I immediately asked to be moved back to the bed. Each day I was able to walk a bit further though, and slowly I was making my way through the halls. The main test at the hospital for whether they will let you go home or not is if you're able to walk up and down the stairs, for some reason I found stairs to be the easiest task and therefore I was allowed to go home a day early.

*this is not my photo

The next two months were the most difficult months of my life. I had to re-learn how to walk, get off the bed, get up from a chair or a couch, how to pick things up.  These tasks, taks I never thought of as difficult before, I now had to put so much focus on to relearn. Walking around our house would exhaust me to the point that I would sleep away the rest of the entire day & it was so tiring to eat that I would often pass the day away without eating. It took more than just those two months to re-train my habits and re-learn how to move, and it took a few years before things began to feel natural.
 

Another aspect of all of this that took some time to get used to was the very large scar that was left along my spine from the surgery. I originally hated it, again it was another thing for kids to tease me about. I went to a camp and kids called me "scar girl" - not even a very creative name! But it is something that I've grown to love. I am now really proud of it, it shows strength and now I wouldn't change it even if I could. When I was young I always worried that my "future boyfriend" would be disgusted by it but I realized over time that someone quality would love me even more for it, because it is something that saved my life - which is exactly the type of person I've found.

Now I am a active and happy person. I am thankful for the entire experience - the fear, the teasing and the pain because I truly feel it has made me a more empathetic, sympathetic and compassionate person. Experiences make us who we are and this experience has really shaped me. People often make judgements for ones appearance and this experience has taught me to never look at a person as if they are "different". 

I am also so thankful to my amazing doctor, Dr. Reilly. He really did save my life and I am forever grateful for what he did for me. He had so much patience, love and kindness towards me and my family. I honestly do not know if we all would've gotten through the stress and heartache of all of this without his immense support.

My experience with scoliosis: has taught me to try and live each day without fear & judgement & to live with love and kindness.

xx

 

The images were taken from www.weheartit.com

The Urban Umbrella
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xoxo