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![](/images/spacer.gif"){kind=spacer}  Submitted August 19, 2006
At nine years old, I was diagnosed with scoliosis – nineteen degrees thoracic and thirteen degrees lumbar, respectively – by my general practitioner. It was loosely watched by Shriners for a few years and during that time I honestly forgot I even had scoliosis. The April I was twelve marked yet another appointment at Shriners. Between a couple bits of rescheduling on their part and once on ours, it had been nearly a year since I’d been x-rayed. Up until this point, my curves had been holding steady; sometimes going up one or two degrees, sometimes dropping down. No one was very concerned as I remember, because they reasoned that since I was so young and growing rapidly (I’ve always been blessed with the title of Tallest Girl in the Class) surely that if anything was going to happen it would have already begun.
This, for me, is what I think of as being more of a diagnosis than the fuzzy day from the back of my memories when I first found out my spine was curved. Now there were things to contemplate, information to weigh, and a thousand thoughts and questions bouncing around my head. I distinctly remembered them telling me that I’d probably never ever need a brace at my last appointment, and now I was looking at surgery sometime in the future. The doctor left the examination room then and told me to give the ‘brace man’ my choice. I instantly knew I was going to ask for a brace. I wanted to do something at least, so even if I did have to have surgery, I would know that I had done all I could to prevent. When I told this to the brace man, a nice orthotist name John, I was given another choice: I could wear a Providence nighttime brace twelve hours a day or a Boston brace twenty three hours a day. It was a whirlwind of decisions and information during that hour at the hospital. I can’t even recall why I chose the Providence, although I’m almost positive it was because I wanted to spend as little time in the brace as possible. They fitted me for the Providence after I’d made my choice by putting me on a plastic peg board and shoving a couple of large ovals that were heavily padded in my sides. I was sent home with a promise of a telephone call when my brace was ready.
I’m ashamed to say I gave up on the brace within a couple of weeks filled with sleepless nights. I went on like that until my next appointment that was scheduled for one month after I’d received my brace. At the appointment, my brace was trimmed to give me more freedom. I was x-rayed again, and they told me the cuts had caused about a five degree increase, but I was still okay. Another appointment for out of brace x-rays was made for six months later, in December. This brought out the worry-wart in me because I calculated I would have gone eight months without an out of brace x-ray by then, but we left determined to make it work. We were off to Shriners again, and long story short, they said it wasn’t my scoli, but if I insisted, I had the option of finding a physical therapist to see if that would help. I went to PT a few times a week for a couple of months before I did my exercises independently. It did seem to help a little, but I felt as though my pain – and my back – were getting gradually worse. Partly because I was in such a gray area and partly because we weren’t satisfied with my doctor for various reasons, my family and I set up an appointment at the Cleveland Clinic for a second opinion.
At the Cleveland Clinic, Dr. Kuivila reviewed my x-rays from Shriners. He was especially interested in the two in-brace ones, particularly the five degree increase between them. He sent me to the radiology department for x-rays because he wasn’t certain that trimming the extension that went down my thigh would result in that increase. It could, he said, be a sign of the curves themselves increasing. My doctor was right: the x-rays taken that day showed a curvature of 54 degrees thoracic and 35 degrees lumbar. This was about a 12* increase in four months, and surgery was recommended. (Dr. Kuivila measured my previous out-of-brace x-rays as being 43* and 31*.) When I told him about my back pain, he said it was probably the muscles being stretched and squished and what not by my curves. He prescribed an anti-inflammatory, Naproxen, to relieve some of that pain, and advised continuing with PT. We made the decision to have surgery but keep wearing the brace, and postponed scheduling until we had a better idea of what events during the next year we had to work around. A couple of weeks after that appointment marked the start of a new school year, and my back pain was increasing. Sitting at a desk all day seemed to aggravate it and I made a trip or two to the nurse’s office to lie down daily. The school nurse and my mom had a quick talk about this, and decided to go back to the Cleveland Clinic and see what they’d recommend. At this point I felt as though I’d been practically living at the doctor, but we got an appointment at the end of September. I’ll always remember this particular doctor’s visit. I was sitting on the examining table when Dr. Kuivila walked into the room, and the second he saw me he asked if I was sitting straight. When I answered yes, he frowned and considered me for a few seconds before saying, “I think we’ll get some films of you today.” When I came back from radiology with my x-rays, we were all a little surprised at their reading. I was now at 64 degrees thoracic and 39 degrees lumbar, which was a shocking progression of 10 degrees in a month in my thoracic curve! This meant we needed to schedule surgery as soon as possible before the curve became so high that a good correction would be hard to achieve. Luckily, October is a ‘slow’ month for surgeries and there was a date available in two weeks: October 13, 2005. SURGERY DAY! The operating room was smaller than I’d expected, about the size of, if not smaller than my bedroom. Someone put something over my mouth and told me to breath, and the next thing I remember is waking up thinking, I have rods in my spine. Those first few moments of waking up are very fuzzy, but I remember people hovering over my and a big tube in my mouth. Everyone was telling me to breathe, and I was becoming frustrated because I was taking in as much air as I could. Finally, they removed my tube, and they started to wheel me out. One of the men walking alongside my gurney asked me, “What time do you think it is?” I concentrated for a second to comprehend his question, then answered, “3:30,” guessing that my surgery had taken seven and a half hours. He then told me it was a quarter after five. I have vague memories of hallways and elevators, but the next clear thing I can remember is being in ICU and trying to watch Everybody Loves Raymond on television. I didn’t manage to accomplish this, partly because I was loopy from the meds, and couldn’t keep my eyes open and focused. I was drifting in and out most of that first night. I was promised ice chips in two hours, and when the two hours had passed, they told me just a couple more. All night I was waiting for ice chips and probably driving my mom up the wall telling her, “My throat’s dry, I want ice chips! When are they giving me ice chips?” My ICU nurses were extremely nice and understanding, but I was their first spinal fusion patient. They only attempted to roll me once, and the way they did it made my back erupt in pain. I spent what felt like a long time probably crying and telling them I couldn’t do it. Finally, the let me go back to the way I had been before, on my back. I stayed that way all night. Post Op Day 1 - Friday
At around 1:00 that afternoon, my ICU nurses pulled something out of my neck, and one or two of the tubes going into my arms. Somehow, I got up to my regular hospital room. The nurses there were absolutely wonderful, and they remained that way through my whole stay. The one who had wheeled my bed up to the room got right to work on the sores that were on my face. I’d gotten them from being face down on the operating table for so long. Then she expertly rolled me over, and promised that my back would feel much better when I was being rolled, and even more so when I started walking around. I developed a slight fever sometime between Thursday night and Friday morning, about 100*, and received Tylenol to reduce it. A lot of people wonder about the pain they’ll be in after their surgery, and most post-op people will tell you it’s pretty hard to describe. It’s an achy thing more that a sharp pain, and your level will probably be about 6-8 out of ten at first. Post Op Day Two – Saturday Sunday
I also started the breathing machine that day. It was a little plastic tube that I had to blow into. Inside the tube there was a ball that I had to move up to a certain marking. The exercise frustrated me a lot, and it got so that I would give whoever shoved it under my nose a dirty look. Monday The resident also said that hemoglobin level was down to 6, and the normal was around 12. Low hemoglobin makes you tired and dizzy, so when I got the transfusion later that day, I would probably feel much better. That Monday night I had my first real conversation with someone since my surgery, which was amazing. I felt much more like myself, and everyone said I had expression back in my face.Tuesday That night, I slipped in the bathroom and scared myself quite a bit, but I ended up catching myself a lot better than I thought I would have been able to. After that incident, my nurse for the night brought up a smoothie and some Percocet pills! I was finally going to be off the morphine. I drank as much of the smoothie as I could stomach, since you need food in you when you take Percocet. Everything seemed so much more focused and clear once I was off the morphine! It was amazing. The pills also controlled my pain much better. All in all, Tuesday was another great day. Wednesday
The day went downhill from there. It was my first setback, and it was very discouraging. At around nine in the morning, I started feeling queasy and threw up a few times. Throwing up is my least favorite thing to do, and it’s ten times worse when you’re aiming for a bucket while lying on your back. After a whole day of feeling sick and not eating much, they decided that I just wasn’t eating enough to handle pills and put me back on morphine. The second I got a shot of the stuff, I felt like I was slipping into a cloud. It was awful, reminding me of how I had felt right after my surgery. In the afternoon I was feeling well enough to go upstairs for my daily PT/OT session, but I got sick again there. I was glad to go back to my room when that was over. That night I started to turn around. I got a great nurse who took me off morphine and helped me eat enough to take a half dose of Percocet. By the end of the night, I was feeling as great as I had in the morning. Thursday It was hard at home for a week or so, especially sleeping, but I was amazed at how quickly I was able to recover. About a month after my surgery I went back to school for half days, and a month after that I was back up to full days. All in all, I’m glad I had surgery. If I could go back in time, I’d make the same choice again. |
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My journey through scoliosis only really lasted for about half a year. About four years passed between my diagnosis and my surgery, but in the first years after my diagnosis, I gave it little thought. I’m glad that now, a few months after my surgery, I’m back to doing just that.
But that April something was beginning. My x-rays revealed that my curves were now at 45 and 33 degrees, the doctor’s assistant told us. When my doctor came in, he explained that I had two options. One was to simply wait and pray nothing more happened – highly unlikely as I was a Risser 0. The other was to get a brace, although he said it was not going to do much good against my curves.
And sure enough, a few weeks later, I was blessed with a brace. The great news was that my curves were reduced to 15 and 0 degrees with it on, and it would have been no problem it all if I had been able to sleep in it. The problem was, I couldn’t sleep. I’m a sprawler in bed, and I found the brace too constricting as well as uncomfortable.
Everything happened so fast in those two weeks. There was the MRI, the pre-op, the prep, the added stretching every night so my spine would be as flexible as possible for surgery. My mom was on the phone constantly trying to arrange her leave of absence. And then on the night of October 12 we were in a hotel in Cleveland waiting for the next day.
At around seven in the morning we checked into the hospital. I changed into a hospital gown and filled out a few thousand forms to add to the others I’d gotten at my pre-op. There was the taking of blood pressure, temperature, and other vitals before the anesthesiologist came in and inserted my IV. At eight, I was in a gurney on my way to the operating room. I remember feeling excited and nervous about staying in the hospital for the next week. I wasn’t really thinking about anything going wrong. I had a lot of faith in my surgeon. 
Although the ice chips would wet my mouth, my throat was still incredibly dry. The combination of morphine and my extreme thirst had me thinking I was seeing great gallons of Gatorade near my bedside, which everyone at the hospital found quite amusing.
I also was visited by physical therapy for the first time that morning. What an experience! I began the very long process of sitting up in my bed. It was pretty scary, mostly because I felt so fragile, and because it hurt so much to use my muscles. After I was seated, my PT had me stand up. That was extremely scary! I was holding onto her the whole time as I was dizzy, and it felt so strange to be standing. My body was different than I was used to – I was a lot thinner and taller than I had been a few days ago. I felt fragile, as though the slightest touch would knock me down. After about five seconds of that, I got to retreat to my bed. My PT promised me it would get easier every day, and that walking would make my back feel less sore.
When the resident came in at around six, I was given the okay to eat breakfast. Even though I hadn’t eaten since my dinner on the Wednesday before my surgery, I had a hard time eating. Food didn’t taste good, and I felt full after a few bites. After breakfast, I decided I felt well enough to call my school and talk to some of my friends. My first period family living class had told me it would be fine to call them, and I did. I felt like I was back in the real world.