Hear from a Scoliosis Patient
Scoliosis Surgery: Corey McConnell's Experience
Corey Elizabeth McConnell provided this article on what it was like for her—a 14-year-old girl—to go through scoliosis surgery. Her experience may be helpful for you or your child facing spine surgery.
Introduction: Why Should You Read My Scoliosis Story?
I guess that I should start this article by telling you who I am, what my life is like and what I like to do. My name is Corey Elizabeth McConnell and I am 14 years old. I live in St. Louis, Missouri, and am a freshman in high school. I am a very positive person and like being around other people. I am a student council representative for my class and an honor roll student. I am 5 foot 8 and athletically built. I lead a very busy life.
There is nothing in the world that I like to do more than swim. Nothing could stop me from swimming (not even back surgery as you will soon find out). I would live in the water if I could. I swim year round.
Right now my professional goal is to be the head of the FBI (no big deal). I am also a normal teenager, I get in trouble for talking on the phone too late or not telling my parents where I am going and who I will be with. Now that I have painted you a picture of my life I want to tell you about the toughest thing that I have ever gone through—a spinal fusion.
Background on My Scoliosis
Sometimes in life you hit a speed bump and it slows you down for a little while or maybe even a long while. Scoliosis is a genetic problem in my family. It is curvature of the spine. I found out that I had scoliosis when I was eleven. I was in sixth grade and was having a great year until I found out that my curve had increased and I was going to have to wear a brace for two years. The doctors expected me to wear it twenty-four hours a day, three hundred sixty five days a year but there was no way that I was going to wear that sweaty, uncomfortable thing all day, so we negotiated. We decided that I would wear it for sixteen hours a day. Which means that I wouldn't wear it to school. I was incredibly lazy about wearing the brace and my family got tired of telling me to put it on so I ended up just sleeping in it.
After wearing the brace for about two years I went back to the doctor for my last check-up before getting rid of the brace (December 1994). We had anticipated that this visit they would decide to wean me out of my brace and that I wouldn't have to worry about my scoliosis for the rest of my life. Boy! Were we wrong. They took my x-rays and the doctor came in. I have two curves in my spine- a thoracic curve and a lumbar curve and it turned out that both of the curves had increased. My thoracic curve had increased to forty five degrees and my lumbar curve had increased to fifty five degrees. This degree of curvature is what the doctors like to call the gray zone. You have two choices in this instance; you can leave your curves alone and see what progresses or you can have surgery. My doctors told me that if I left my curves alone that they would increase a degree a year which doesn't sound so bad until you factor in that I was only thirteen years old. By the time I was forty three I would have eighty degree curves and look like the hunch- back of Notre Dame. For this reason and many others we decided to go ahead with the surgery.
The particular kind of surgery that I had was called an anterior-posterior spinal fusion. It is about a ten-hour surgery in which they open you up on your side and on your back. In my particular surgery they would put three rods in my back and hold them together with five screws. This would hold my spine straight. In order to help my bone grow they took out one of my ribs and six of my discs, and they also took a bone graft from my lower hip (right on my butt). They took this bone and filled three cages that hold the bone which are in between the vertebra. This whole procedure sounds like a lot of fun, doesn't it? Little did I know that before the surgery there were many more tests and other things that I had to go through....
Getting Ready for Spine Surgery
Giving blood is definitely a good thing to do, don't get me wrong, but I didn't like it very much. During surgery you lose blood so the doctors want you to donate before the surgery in order to get your own blood back. One of the places that you can give blood in St. Louis is the American Red Cross. When you get to the Red Cross you fill out the same applications every time, they ask you your weight, and specific questions like if you have had dental work in the last three days. They take you back and you sit in a chair and they stick you with a needle and draw a unit of blood from your veins (about a pint). This was not a good experience for me because they couldn't find my veins and had to do some searching. After you give blood they make you sit down and drink lots of fluids. You don't exactly feel one hundred percent because you are very weak but you get over it. I am very glad that I did give my own blood though because I needed it all back and felt much better after I got it.
The doctors need to know everything about your body before you go into the surgery. I had to go to the hospital and get a series of tests done. The first thing that they did was to draw a test tube of blood from my hand to test my blood. Then they did an EKG. In this test they put gel on your chest and put little pads that are connected to wires to get your heart beat. Then they did a clotting test which is where they put two small cuts (one millimeter deep and five millimeters long) on your arm and see how long you bleed. Then they get a chest x-ray and finally a urine sample.
How I Handled Having Surgery
Having this back surgery was the most terrifying experience of my life and nothing meant more to me than to know that everyone was behind me. The toughest thing that I had to do was tell my friends. It was tough because I couldn't do it without crying. I also had to deal with missing spring break because I was going to have the surgery a week before spring break. I had practiced a certain way of telling my friends but most of them found out by word of mouth. It wasn't that I was afraid that they would make fun of me it was just a very sensitive subject for me at that time. I didn't want to even think about it but it kept jumping back in my head. My friends and family were so incredibly supportive that it was phenomenal. My mom had shirts made that said "Corey's Healing Squad" and sent them all over the country to friends and family. I got pictures of people that I hadn't seen in years wearing these purple shirts. It felt great to know that everyone was thinking about me and sending me good thoughts.
Countdown to Surgery Day
The day before the surgery I left school around lunch-time. It was a very tearful farewell for me. Everybody was there. I also had a lot to carry. I got balloons and flowers and cards. It was absolutely unbelievable how generous people were. After I left school I went home and changed my clothes and got prepped to go to the hospital. When we got to the hospital I decided that I wanted a distraction so I had asked my dad to borrow his cell phone so that I could talk to my friends. This was very cool. I was going up the escalators talking to people and feeling really important. I went in for a final time to see my doctor (Dr. Lenke) and ask any final questions. I really didn't have any, I just wanted to get it over with.
After visiting with my doctor (who had also received a shirt) I went over to Children's Hospital where I was going to stay. I got checked in (all the time talking on the phone) and got to my room. What now? I was checked in but it was only four o'clock in the afternoon and I had nothing to do.
We got a visit from the anesthesiologist who told me what she would do. She would make sure that I didn't feel anything. They had drugs to make me sleep, and to make me numb everywhere. She also told me that they might try to wake me up during the surgery to make sure that I was OK, but she told me that I wouldn't remember it at all.
One of my friends wanted to come visit me before the surgery so she came and I had dinner with her and that helped me a lot. Once she left I made some last phone calls to people who I told that I would call. The doctors then decided that they wanted to put in a "local anesthetic". This was a fancy name for an IV. This was scary because along with being terrified about the next day I hate needles. I made them tell me how bad it would hurt and if it would be better or worse than giving blood. It turned out to be no big deal but then I had to walk around with a big pole and a wire in my arm (it made it pretty inconvenient to go to the bathroom and took a little getting used to).
That night I slept incredibly well even though I was scared to death. I was awakened at six and they made me go to the bathroom. They then wheeled me down to the operation waiting room in my bed. This was where it really hit me, this was it. I started to cry and my anesthesiologist came over. She said, "Here this will help," and that is the last thing that I remember-she knocked me out.
Reality Hits: After Surgery
I barely remember waking up. I remember that I couldn't open my eyes and that I couldn't move. I was in immense pain but that only lasted for a few minutes. I wish that I could tell you about my first couple days in intensive care but I don't remember much. I remember that everyone was very nice and I remember that I was fortunate and didn't have to have a tube draining my stomach coming out my nose (gross). They had me wearing a sort of shell on my face that was pushing out air that was very moist and when I didn't breathe deep enough a little beeper would go off. I also remember that I had a lot of fluid in my lungs so they made me cough. I had to squeeze something in each hand in order to cough because it hurt a lot. In order to control the pain they had me on a PCA or Patient Controlled Analgesia. It was a morphine pump that I pushed when I felt the least bit uncomfortable.
Breathing played a big part in my daily routine. A lady came in 3 times a day with a breathing machine that I had to inhale in and try to make the little dial go up. To really let you know that I don't remember much, one of my friends came to see me in intensive care and I only remember seeing her for about a minute and she was there for twenty minutes.
I was in intensive care for three days, then I was moved up to my room on the top floor. On the first day in my room my doctors came in and made me get up. They had a certain way of getting me up. First I had to roll on my side and then my legs had to go with my body as I slowly sat up. Boy was this an experience. I don't think that anything had hurt so bad in my life. Once I was standing I could feel my legs shaking and I was very queasy. This got much easier and after a couple days I was sitting in chairs. Everyday two times a day a physical therapist came and she walked me, made me do leg and arm exercises and helped me climb the stairs again. I didn't like it then but now I realize that she was really helpful because without her I would have never gotten up.
I got many gifts, flowers, and some visitors. I think that everyday I got an average of 5 cards and about 2 flower arrangements or candy. This was totally overwhelming and it felt really good to know that people were thinking of me and wishing me well. There was nothing that I needed more than love and support then. My godparents flew in from Atlanta to stay with us and help take care of me. Then my grandparents came and they also helped take care of me. The progress became more and more visible as the days went by. I had to rest a lot though. There was one thing that I didn't do for two and a half weeks after my surgery and that was eat. I lost about twenty pounds.
I was home for about a week and then I gradually started going back to school. The first day back I went to one class then attended each class each day. I then got into half days and finally full days. Everyone was very considerate and everyone knew that they weren't allowed to bump into me.
Things basically got back to normal. After about five weeks I decided that I was ready to get back in the water. This was against everything that my doctor stood for as an orthopedic surgeon. I didn't swim much but just like school I got back into it gradually. I was doing almost full practices by eight weeks. For my six week check up I told Dr. Lenke that I had done flipturns and he literally flipped. He was amazed at my progress and cautioned me to be conservative.
Keeping the Faith and Knowing I'd Recover
The toughest thing in the surgery that I had to deal with was believing that I would recover. Most of the days that I was home I just lay around not wanting to get up or do anything. I hated walking for my therapy. All I wanted was to be back to me again. I had to teach myself to notice the small steps of my progress and be happy with those. I had to learn that it was going to be a while before I was really back to normal. I still am doing more than I should according to the doctors but that is just me. I sort of feel right now that my progress is being slowed by my doctors restricting me so much but in my next visit I will have a lot of the restrictions taken away. I just have to keep looking forward and into the future. I have to keep thinking that I will be one hundred percent in about a year. Right now it is hard to look that far in advance because I want to swim now and I want to ride my bike now and I want to roller blade now, but I just have to wait - it's only three and a half months. I try to remember that inside healing bone takes longer even though I feel great.
In Conclusion on Spine Surgery
I think that my purpose in this little article was to give you faith in your ability to get through this tough time. It is going to feel really slow and hard for about a month but remember that each day is a bit better it is all up hill from there. It might be a slow walk but you will get there and it will all be over. You will never get anywhere with a frown on your face so remember to turn that frown upside down! Always look ahead - we're lucky to be able to get fixed so perfectly.
Peace, Love, and Happiness GOOD LUCK!