Saturday, January 22, 2011

My Story - Diagnosis and First Surgery

When I was a little girl, life was fairly normal. My parents had enrolled me in a figure skating class at an early age, then I was a member of the girls softball team, and despite not really liking sports, I played soccer and dodgeball at school. I went to summer camp, I was enrolled in swimming lessons (although I was terrified of water and never learned to swim, but I digress!). During the summer, I went to the beach, played games with my friends, rode my bike..all the normal kid stuff. In the winter, my favourite activity was sledding down steep hills and going skating. Then, in 1985, it all changed. I was 12 years old and thought I had my life ahead of me. It never occurred to me that I would be putting my skates away for good that year, or that that summer would be my last time going to the beach..it never crossed my mind that I would never again be able to enjoy the feeling of tobagganing at full speed down the hill, or that I would never have a chance to go on a roller coaster, or go skiing or horse-back riding. No one told me. I wish someone had told me.

This is how it started. One evening, I was sitting at the kitchen table doing my homework, when mom noticed something seemed wrong with the shape of my back. She probably thought I might have been slouching, so she told me to straighten up. But I wasn't slouching, and when she looked closer, she could tell there was some kind of lump protruding from my back. She made an appointment with the family doctor. After looking at me just briefly he suspected I had a back disease called "Scoliosis" and told us I would have to go see the specialist. At this point, I don't think my parents had any idea what Scoliosis was. I certainly didn't. My back did not look very crooked back then. I had no reason to be worried.

The specialist was Dr. Douglas Brown. He worked at the IWK Children's Hospital in Halifax, and came down to a clinic at the Yarmouth hospital every month. So thus started a long habit of going to see Dr. Brown at the clinic. After my first appointment with him and my first xrays, he said I had to have an operation. He explained that it was too late for a brace. I think I had a 52 degree curve. I wasn't fond of him. He was a cold, intimidating man, who stood at least 6 feet tall and 'never smiled'. I don't remember what I thought of my upcoming surgery. I guess I was scared, but believed that it was just a one-time obstacle in order to stop this disease, whatever it was. My parents thought the same way, I think. The first memory I have of realizing what this was..is when I took mom's huge medical encyclopedia and looked for Scoliosis, to see what they had to say about it. I remember looking at the pictures of people who had it. They were so distorted and crooked! They looked like side-show freaks. I thought to myself that I would never be deformed like that because I was going to have surgery. I didn't realize that one day, I would look exactly like those awful pictures.

I had the surgery in June of 1985. I was in no way prepared for it. I'd had minor surgery to fix a lazy eye when I was 5, and another minor operation to remove a thyroglossal cyst when I was 7, so I was somewhat familiar with hospitals and being 'put to sleep'. The cold and aloof Doctor Brown certainly did not assuade my fears or explain what I was about to endure. I was terrified of needles to start with, so I ended up traumatized by having to have a blood test before the surgery. What happened afterwards, for the next 14 days or so, was hell. Daily needles and blood tests. Each day a new terror. Needles in my thighs, butt, and arms. Add to that the dreaded daily finger-pricks and you have my worst nightmare come true. Plus, the pain as the anaesthetic wore off. Then the shock of realizing I had to learn to walk all over again. The horror of being hooked up to machines when I woke up, of having IV's and blood transfusions stuck in me for days..the pain of having them change the IV needles and of course, the daily pain of the nurses changing the dressing on my back. I thought that the pain of having them take the dressing off was the most pain I had ever experienced. It was so bad, it made me scream. It felt like they were ripping my skin off! There were other horrors: the constant cries of agony and pain coming from the other rooms, from the other patients on the ward. Then there was the loneliness and feeling of vulnerability at night, when everyone left. Calling for nurses and having no one come. Pushing the nurse button forever before someone showed up with pain killers.

The first few days after the surgery were really hard. It's impossible to describe the feeling to anyone who hasn't experienced it. Imagine being totally unable to move. Imagine being in pain, and feeling like you were totally stiff and wrapped up in bandages like a mummy. Then comes the day when the nurses have to get you to sit up for the first time. That was so scary..my whole body felt as heavy as stone! I was horrified that I didn't have the strength to sit up. And once they were holding me up, I felt nausaus and light-headed, yet at the same time pain and heaviness, like I was in molasses. It takes a week of therapy and walking slowly before you can walk again..maybe more than a week. And those first times, your head feels like a heavy rock and everything hurts. You can't move your neck to look behind you, or look up..and you can hardly move your arms either. It's a really scary experience. Another painful aspect of hospital stay is that they change the bed sheets every day. They did it two or more nurses at a time, I think, and with great difficulty. Being pushed and pulled and having the sheets taken from under you while you are in excruciating pain is not a pleasant experience. There's also the complete sense of vulnerability that comes with having a cathater, being unable to brush your own teeth, and having to use a pan or bowl for your bathroom with the help of strangers.

Another very bad memory from that hospital stay is when they put on my cast. I was brought to this sterile room and hauled onto some kind of steel contraption which represented a bed but was nothing more than cold, metal bars. I was in a great deal of pain and could still not move much without help. The doctor and nurses lifted me off the stretcher and onto the bars. Then Dr. Brown started putting some kind of very hot liquid all over my stomach. He patted and molded strands and plaster until it hardened and I felt like I couldn't breathe. The cast started to tighten and I panicked. It made me cry, and scream..and his gruff attitude didn't help. I kept telling him that it was too tight and that I couldn't breathe, but he paid no attention to me. It took a long time for me to calm down and get used to being stuck in this thing. Not only was the way it was put on me traumatic, but I had to wear it for the whole summer. Little did I know, the way in which it is removed is equally as traumatic for a 12 year old.

Now I jump ahead to explain what happens after the surgery. I think I stayed in the hospital 14 days. Like I said, I had to wear that plaster cast all summer. It was itchy and uncomfortable. My clothes didn't fit well on its bulky shape either. When I went back to get the cast removed, it was quite a scary event. I was once again hauled onto that steel bed and the cast was literally sawed off. The noise that the little round saw made was enough to send me into hysterics, not to mention the knife which he was also using to pry open the cast. Another painful event to close a nasty chapter of my life? Hardly. It was only the beginning.


Surgery #1
Age: 12
Date: June, 1985
Rods: Harrington Rods
Degree: 52 degrees, I think
Hospital: IWK Childrens' in Halifax, Nova Scotia
Surgeon: Dr. Douglas Brown, retired in 1998

© Copyright Lise Robichaud 2011.

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