Hi, my name is Ali. I am 15 and I had back surgery in June. Here is my story:

Diagnosis and Brace Time
It all began when I went to my pediatrician for a check-up because my asthma was acting up. I was in the 7th grade and 13 years old. She was listening to my lungs when she noticed something not right about my back. She had me get off the table and bend over and touch my toes. She said that I had scoliosis and she gave my parents a referral to an orthopedic surgeon. She said that he was the best in the city, which I definitely think. We made an appointment to see Dr. Bergin, the orthopedic. I figured he must have been pretty good if it took 4 months to get an appointment to see him. When I went to my appointment I had to have x-rays of my back. After that Dr. Bergin and his residents went into another room to look at my x-rays on a longer board so they could measure my curve. My curves measured out to be 20* and 17*. I had an S curve. Dr. Bergin decided to brace me because I had a lot of growing to do.

The next thing I knew was going to see Walter a Physical Therapist who was going to make my brace. At my first appointment with Walter I was measured for my TLSO brace. Walter gave me a sock like outfit to put on. It was really tight and you could see my underwear and bra right through it. Walter measured different parts of my body and recorded on his chart. Then I just had to wait about a month for my brace to be ready. When I went to pick up my brace I was terrified. It was my last day of freedom. When I saw the brace I began crying, I didn’t know how I could possibly wear that. I put it on and it was really tight and uncomfortable. Walter kept on asking me about different parts of the brace and how they felt. When I would tell him something hurt, he would take the brace and trim it there. No matter how much Walter trimmed it was still terribly uncomfortable. I wore the brace home in the car and I cried all the way home because it hurt so badly.

I had a schedule to get used to the brace. The first day I would wear it 1 hour and then 2 the next, 4, 8, 12, 16, 18. Once I got use to the brace it wasn’t uncomfortable. My clothes went up one or 2 sizes. I wore a lot of sweatpants and sweatshirts in the winter. I also wore those "wife beater"-type tank undershirts underneath it. I even found jeans to wear that didn’t show it. Even though my brace was not uncomfortable anymore, I still hated wearing it because I just wanted to be like all the other teens I went to school with. I was also very self-conscious about my brace, but no one even noticed unless I told them about it. The first year I had my brace I wore it religiously. Sometimes I even wore it 20 or 22 hours a day. Over the year my curves did not progress very much. They went up into the mid 30s, but I don’t think that is that bad for a growing girl. As the first year ended, I found myself going back to Walter a lot more to make adjustments on my brace. We finally came to the conclusion that my brace was too small for me and that I would need another one. So we went through the whole process again. But while waiting for my new brace I didn’t wear the first one very much because it was unbearable at this point. The brace was irritating my skin a ton and at one point it broke one of the sores it created and it made me bleed. When I finally got brace number 2, I was already use to life without a brace. And I really liked it. This made getting use to another brace even rougher. I got use to my 2nd brace but I never had the enthusiasm to wear it. My 2nd brace also caused me a lot of pain even though it was a lot better then how my first brace was towards the last month in it. I began finding ways to sneak out of my brace when my parents went to work so that I didn’t have to wear it to school. I definitely wasn’t getting 18 hours a day in anymore.

When we went back to Dr. Bergin, my parents explained that I was having a rough time with this brace. Dr. Bergin said just to try and wear my brace for 4 more months and then I would go part time if all looks good. I definitely did not wear my brace as often as I should have for those four months so when I went back in July he took me out of the brace completely. My curves were 48* and 49*. So you can see how fast they jumped when I didn’t follow doctor’s orders. He said we were talking surgery or wait and see. Dr. Bergin recommended to go home and think about this and come back in 6 months and see what my curves were then and then go from there. He said that I would most likely need surgery in the future and that it would be better if I had it before I was 25.

Pre-Op
When we went back in January, my curves were the same but Dr. Bergin said that he thought I should have surgery, but that it was up to us. From July to January we did a lot of thinking and a lot of researching. We decided that if the doc wanted to do surgery then we would do it. We scheduled surgery for June 11, 2003, 7 days after I got out of school, so I would have the whole summer to recover and be back on track for school. At my next appointment, my doctor said that he was going to an Award Ceremony for another orthopedic surgeon and was wondering if we could change my surgery to June 13th (Friday the 13th). Dr. Bergin also said that my surgery would be a posterior spinal fusion. This was fine with us so now my surgery would be June 13th.

Morning of Surgery
The morning of surgery I woke up at 4:30 am so that we could leave at 5 am. I did not get any sleep the night before. I was so nervous. The night before I was not aloud to have anything to eat or drink after midnight. I also couldn’t have any nail polish onmy fingers, no jewelry, and no gel or anything in my hair. We had to be at UIC (University of Illinois at Chicago) by 6 am. Since there wasn’t Chicago traffic because it was so early, we ended up arriving early. When we arrived we were the first ones in the APEC waiting room. We sat in the dark because we didn’t know where the light switch was. Finally people started arriving. At about 6:15, I got called back. My mom and dad and I all went back. A nice nurse told me to go into one of the dressing rooms and take everything off and put on a gown on the front and one on my back. I also had to put on footies and a cap. I looked really funny. We locked all my stuff up in a locker and went into a room with a bunch on beds. They had my lay down on one and a man came over to me and started my IV. I was really scared about my IV but it didn’t hurt at all. This guy was really good so he autographed the tape over the IV. Then my sister came back to see me. Since it was only two at a time my dad went out into the waiting room. When she left I started crying. Then my brother came back and visited me and when he left I started crying. Then my brother-in-law came back and I almost started crying when he left but my mom made me laugh so I didn’t. Then my dad came back in and sat with my mom and me. My doctor and some residents stopped in to say hi. And then I met my two anesthesiologists. One of them was really young and cute and he talked like Arnold Schwarzenegger. They were both really nice and explained everything that was going to happen to me. Then the cute one said in his accent, “You’re going to like this juice.” He started shooting relaxing sleepy juice into my IV. At first he shot it in like 3 times and I started coughing and choking but then I was ok. Then they started wheeling me away. I didn’t even cry when I left my parents because I was already falling asleep. I couldn’t keep my eyes open. When I got to the OR, I remember a nurse asking me questions and I was answering her back but I can’t remember what she asked me. I also can’t remember what she looked like because I couldn’t keep my eyes open for more then 30 seconds. They were also putting electrodes on my chest and back. I didn’t stay awake for more then 2 minutes in the OR.

Family’s Experience
During the 7½-hour surgery, my family was very anxious and worried. They told me that they prayed a lot, read magazines and newspapers, watched the TV, and talked to other anxious families. At 1:30 a nurse called them to tell them that I passed the wake-up test. This is where they wake you up and ask you if you can move your feet to make sure your not paralyzed. I do not remember this thank god. All they do after the wake-up test is close you up. Then after the whole surgery was over (3:30) Dr. Bergin came out and told my parents how well the surgery went and told them they could go up to the ICU in about 20 minutes to see me. They went straight up and when they came in I woke up to their voices. During surgery I received 2 units of blood back, I almost needed 3 so good thing my aunt donated for me.

Recovery at Hospital
The next thing I remember was my mom, dad, Laura (my sis), Kevin (my bro), and Chad (my bro-in-law) saying hi to me. I could only open my eyes a little because they were so swollen so I just waved and smiled. The first thing I said was I want my morphine. Because I was mumbling my sister thought I said I want my puppy and so she repeated that back to me, and I replied, “No, Morphine.” My nurse asked me what my pain level out of 10 was and I said 7 and then she asked me if I wanted my morphine. I was like yea I want it right now. Once she gave me my morphine my pain level went down to a 3. It stayed at about a 3 for most of my hospital stay. In the ICU I slept most of the time. I had a lot of tubes and needles, I’m glad I couldn’t see them. I had a drain in my back, draining blood and fluids, I had a cathedar, an IV, some line in my wrist with a bunch of needles that I’m pretty sure was to monitor blood pressure, and oxygen tubes in my nose. There may have been more but that was all that I was aware of. My favorite thing on me would have to be my morphine pump. That was great, I got morphine into me continually and then I could press a button for more. I stayed in the ICU for 3 days.

• Day after my surgery - I sat up on the side of my bed, but I got dizzy so I had to lay back down again. I also had to lift my arms to my head and lift my feet. Those things were easy to do. Breathing treatments every hour that I was up.
• Day 2 - I sat in a chair for 30 minutes twice. I could not keep my eyes open while I was sitting.
• Day 3 - I walked to the door and back. That was really tiring I took a nap right away. I also sat for 60 minutes twice. My favorite nurse, Kris, braided my hair. Took the cathedar, oxygen, morphine pump off (I was mad about that one). I’m now on Vicaden, Valium, and morphine (I got the morphine through my IV but not continually.)
• Day 4 - I walked around the whole floor and went up a flight of stairs. After that my P.T. said she didn’t have to come back anymore.
• Day 5 - I got x-rays taken and my best friends came to visit me. I also ate my first solid food. I refused to eat because I had heard of people throwing up everything they ate so all I would eat was jello and I would drink apple juice. I finally ate a sandwich from this place called Potbelly’s. The residents that came to visit me when I was eating all wanted one. If I didn’t eat I wasn’t gonna be able to go home or they were gonna make me drink a supplement and I was informed they are very gross so I decided to eat.
• Day 6 - I went home. It was so nice to be at home. It was a long car ride home.

Recovery at Home
Two weeks after surgery I went back for my first post-op visit. They checked out my incision and said everything looked great. At 2 ½ weeks post-op, I stopped taking Vicaden and Valium. I also started sleeping the whole night at about 2 weeks. At about four weeks I started driving again and playing tennis against the side of the house. I went back for my 6-week appointment and the doctor said that I could swim now and ride a bike. I’ve tried riding a bike, it’s kind of weird being so straight up but I didn’t fall. It's amazing how fast kids bounce back from major surgery like this. I’m happy to say that I am recovering great and I have no regrets with having scoliosis surgery.

Scoliosis has made me a stronger and better person and now I know I can get through anything.

You can find Ali (screen name Alison) on the SpineKIDS Message Boards.