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Cassie: My Scoliosis Journey

Cassie: My Scoliosis Journey

Part 1: Beginning the Journey

When I was younger, I was a very good swimmer. In fact, I had been on a swim team since I was five years old. I seemed to be in the water more than out sometimes. I knew all the swimming strokes and my best were the back and breast. I was well on my way to becoming a great competitive swimmer. But at the age of 12, I seemed to always be getting disqualified for my touch. In the swim strokes, I competed in, you had to touch with both hands. Every time-reach, whistle, disqualified. I swore I touched with both hands. A swim official decided to test me and really take a look at my touch. It was then that she noticed as I approached the wall, my one shoulder was much higher than the other causing me to touch unevenly. She happened to be a doctor and suggested that maybe I had a curvature of the spine.  She told my mom I should be checked for scoliosis. It was the first time, I heard the word!  

My mom made an appointment with our pediatrician. Tests were done; an X-ray and a CT scan. The X-rays were easy. The CT, not so much! Being put in a big tube was not my favorite moment! I was so scared. I remember they let my mom hold my hand as I was placed deeper into the tube. I had to hold still and had earphones on. In the tube I was good, because I had to be. But I was so very scared! I remember tears rolling down my cheeks and the back of my head getting wet. As I came out everyone told me how very brave I was but I sure didn’t feel that way. And why did I feel like there was more to come!

After we got the results back, it was official, and at the age of 12, I was diagnosed with scoliosis. My curve was called a 15 percent left thoracic curve. I was told I would have to be fitted for and wear a back brace to try and prevent the curve advancing.

So off to the brace maker we went. To be fitted for a brace you have to lie on a table and be wrapped in cold wet gauze. You have to lie still until the mixture dries. It is not an easy thing to do, nor is it very uncomfortable. A few weeks later, we picked up the brace. My back brace went from under my arms, up around to the front of my neck, back under my arm then high again up my back. It was long enough to go past my hips. In the brace, I was unable to move that entire section of my back. It was so uncomfortable! Oh and it wasn’t bad enough that it was uncomfortable but it was embarrassing too! You could see it if I wore a regular shirt. I looked like the Tin Man from The Wizard of Oz but only in a big white brace. I decided to wear a sweatshirt all the time to conceal I even had the ugly thing on. I wore a sweatshirt all the time, even in over 100 degrees desert heat! There was no way I letting anyone see this thing.

Over the years, I was fitted with two back braces as I grew out of one, I was fitted for another one. Each time my family was told that in spite of the brace, my curve kept progressing. I remember my mom crying at one visit and then I started to cry. It was a very scary time for me. You never see your parents cry so I knew this was not going to be good.

Eventually over time the braces didn’t help and I had progressed to a 50 percent left thoracic curve with rib hump. In photos you could see that my left shoulder was four inches higher than my right.  You could actually see that my shoulders were off in photos. My spine specialist now told us that my scoliosis curve had started to impede on my heart and lungs and surgery was now my only option. Wearing a brace was one thing, but actually hearing I had to have surgery was terrifying!

Part 2: The Hospital and Surgery

To prepare for my scoliosis surgery, I had to get standard blood work done and a chest X-ray. For the most part, it wasn’t too bad. But what I did hate most was having to give two auto transfusion units of blood ready to be on hold in case I needed them during surgery. This involves you donating two units of blood prior to surgery to be used during your own surgery in case you need them. I am fairly thin so each time I went to donate I got dizzy and almost passed out.  I hated going to the donation site.

On the outside I seemed fine but on the inside, I was scared to death! I had my entire family with me, even my grandma and grandpa flew in from Pennsylvania. Before being taken into surgery I was hooked up to all these electrodes that would be used to make sure all my nerves remained intact during surgery. I looked like a science fiction character. It was at this point I broke down. I started what we call in my family the ugly cry. My mom was holding my hand and she started to cry too. There we were both crying and both scared. My mom gave me some quick kisses and words of love. I don’t remember anything after that.

I woke up in the ICU with my family all around me. Time sort of went in and out. Any time I felt pain I was told to use my Morphine drip. I could just hear beeps and I think I remember my parents talking to me. I know my mom spent the night because she was always there. It is funny the things I remember. The very next day physical therapy came to get me up to a chair. I know they got me up in a chair but I have no idea how they did it. I do remember my grandma bending over to give me a kiss and accidently hitting the head up button sending me moving up. My eyes got really big and the rest of my family just yelled out at her to stop leaning over so that the bed would stop going up. Everyone moved to the bedside to lower my head. I was doing so well in the ICU I was moved out a day early.

Once on the floor things started to get harder because physical therapy has you up and out twice a day walking the hall. I didn’t want to get up and move. I just wanted to lay in bed. You also need to start eating. I had no appetite and all my family wanted me to do was eat. My dad just kept saying eat, eat, eat I was getting sick of it and just didn’t want to eat. My mom kept ordering food and it just looked bad to me. One morning my dad tried to put a Cheerio in my mouth and I was so mad I took it and spit it out with the tip of my tongue and was able to hit my mom at the end of the bed. Everyone in the room cracked up including my mom!

I was on the floor for about three days and progressing fairly well. It was at this time I was told I was going to get to go home. I was very excited to get out the door and go home.

Part 3: The Journey Home

The day had finally come and I could be discharged. There is nothing better than being told you can now go home! The funniest thing was, I just wanted to get home and see my dogs! It wasn’t to sleep in my own bed or be home with my family. Well I did want to be home with my family, but I really missed my fur family!

The hospital had given me a bunch of these flat paper like pillows and they really came in handy. We were able to take them home because the hospital tosses them after you leave. We placed them on the car seats. I sat up front and I just remember being very stiff.  I know I didn’t like the bumps in the road that was for sure. But I remember my dad doing the best he could do to avoid all bumps, manholes and potholes.

Once home, the days sort of blurred together at first. I would get up, get cleaned up, and get my back dressing changed. Taking the tape off my back to change the dressing hurt a lot. I seemed to have a sensitively to the tape which made it hard to peel off without taking skin off.  Once we got through that, I felt so tired I had to take a nap. The first few days I slept on a portable bed in our family room. After a few days of that, I was allowed to go up and down stairs once a day and since my bedroom was upstairs, I would go up at night and back down in the morning.

One of the things I really wanted to do was shower but I wasn’t allowed to get my back wet. My mom was able to rig up the shower with an outdoor resin chair and my dad installed a hand held sprayer in the shower. It worked really well. I just sat on the chair and literally got hosed off.  For the most part, it was just my front getting hosed off but it made me feel fresh. It always felt great to get washed, but it sure did make me tired. For clothes, I wore a lot of elastic tank tops and pants made out of cotton so they were very comfy. The tops, I actually stepped into and my mom pulled them up and over my arms.  I never had to lift my arms up because the tank tops just stretched up my arms. They just slipped onto my arms as the shirt when up. Wearing everything elastic made dressing very easy.

It took me a while to get an appetite. I knew I had to eat well because I had a lot of healing to do. I was sure to eat lots of protein and calcium. Even if I didn’t really feel like eating I was sure to get the right food groups needed to promote healing.

After a few weeks home, we started to get cabin fever. My sister was back at school and my dad was out of town. So it was just my mom and I all day, every day, repeating the same process day in and day out. I think we were both feeling down so one day my mom said let’s go to McDonald’s. I couldn’t believe she had said that! I thought she was crazy! She placed a bunch of the paper pillows in the car and carefully loaded me in. She was careful to not hit potholes and stop the car suddenly. As we went through the drive thru we started to crack up! Here we were just trying to get out and we were getting fast food. It was such a nice break and the perfect thing to do. Fast food had never tasted so good! LOL We did that every few days and it began to be our little adventure.

I also started physical therapy after I got home. Most of my therapy consisted of helping my ability to move, improving my functional ability strengthening and flexibility. The work was hard, but my physical therapists were so nice.  The fact that I wanted to work hard made the process easier. My mom kept telling me there would be a light at the end of the tunnel and as therapy went on, I found that to be true.

After a while, my hair started to look pretty dirty so my mom made an appointment with a nearby hair salon. We went to the hair salon to get my hair washed because I couldn’t get my head wet for a long time. It was hard to tilt back into the bowl but with those extra flat plastic pillows it made it tolerable. Having my hair washed never felt so great!

I was six months out of surgery and I was itching to get back in the racing seat! Along with swimming, at the age of 10 I had started racing quarter midgets in South Mountain Park. I began to win and over time I discovered I really had a passion for racing! After Quarter Midgets, I moved up to the Bandolero Series and then the Legends Series. I had started to race in the ASA Speed Trucks when I had to undergo surgery. At this six month mark, there was a practice for the Legends scheduled in Tucson and I thought that would be a perfect place to start. We had a special SFI certified seat made for the car. This special seat fits exactly to my body dimensions.  At my appointment, the X-rays showed that I had significant healing in the surgery area and my spine specialist allowed me to just practice on a track with no other drivers. It was the news I had been waiting for.  Once I completed my first practice, there was no turning back! I was back…. back to racing!

Please know that Scoliosis does have an end and it is survivable.  I can honestly say going through the surgery was so worth it!  I was told after surgery that I grew two inches during surgery. My curve was that bad that I was 2 inches taller once I was straightened. Once I went through physical therapy, got back to school and back to racing, I found I had so much more self-confidence! No more sweatshirts! I could now stand up straight and tall.  I also began to move up in my racing. I own my own NASCAR Super Late Model team. I have raced in NASCAR K&N Pro Series West, ARCA and NASCAR Camping World Trucks. My goal is to eventually race in the NASCAR Sprint Cup Series. Don’t let your fear stop you! Scoliosis is just like taking the green flag… work through the race and know that at the checkered flag it is so worth the journey!