My name is Martha and I am 14. My scoliosis story begins in 4th grade.

The Diagnosis
When I was in 4th grade, my school did a scoliosis screening. My screening took the same amount of time as everyone else's, so it was a complete shock when my parents received a phone call asking them to attend a meeting at the chiropractor's office. They went to the meeting but they didn't really trust the chiropractor, so they waited until my next checkup with my pediatrician to do anything.

At my checkup my doctor checked my back and said he thought it was fine, there was just one vertebra out of place or something. The matter was dropped and he just did a careful check on me each time I came for a checkup.

Two years later, in early 2001, I went to my pediatrician because my knee had been bothering me. While we were there my mom asked him to take a look at my back because she thought it looked like my curve had gotten larger. He checked and sure enough, my curve was now visible. My mom had brought in the name of a doctor she had read about in a magazine to see if my pediatrician thought he was good. My pediatrician said the doctor, Dr. Sarwark, was very good, so my mom called to set up an appointment.

A few months later we went to Children's Memorial Hospital in Chicago to see the doctor. After about a three-hour wait we went in. I got x-rays and he checked my back and so did some residents. Afterwards he said that my curve was 28 degrees. He said that he thought I should do physical therapy to keep my spine flexible and possibly prevent needing a brace or surgery.

I went to a physical therapist. I went once a week for a half an hour. Everyday I was supposed to do all my exercises twice. That took up an hour of each day. Two of my exercises were just lying on my side on a rolled up towel or exercise ball.

I was very diligent about my exercises for the first 4 months. When I went back to my doctor in June 3 months after my first appointment, my curve hadn't changed at all. However, once summer started I went to camp for six weeks and never did my exercises once the whole time. I did my exercises some when I got back, but not very often.

The Brace
In September, I went back to my doctor for another appointment. After looking at the x-rays and my back, he said the curve had progressed to 32 degrees. Even though it was still relatively low, he wanted me to wear a TLSO at night to try to keep it from progressing more. My mom set up an appointment to have the brace fitted a few weeks later.

We went to the appointment and I was told to put on two of these things called body stockings. Then I went to a room with a really strange metal bed in it. I lay down on the bed and the orthotist and his assistant started to wrap me in the stuff they make casts out of. As the stuff hardened it got really warm and tight. To make sure the brace would help my back they pushed on me to try to make my back straight. Once the stuff was hard the assistant took out a knife and cut along a rubber thing they had put between my body stockings and the cast. Then they pulled the cast off and I went back into the room where my mom had waited.

A bit later we came back and got the brace. It wasn't that big of a deal. I actually thought it was kind of cool at first. It wasn't very uncomfortable either. Since I was only supposed to wear it at night, they gave us a bag to bring it home in. I was very self-conscious as we left the hospital because the bag was just clear plastic and everyone could see it. We were going to go straight to my play rehearsal, but I made my mom stop at home to drop off the brace because we were picking up two of my friends on the way and I didn’t want them to see it.

I got my brace on a Tuesday and I was supposed to wear it about an hour a day until Saturday, when I would start wearing it all night. I tried to wear it for more than an hour that week, but it was hard since eating in it wasn't very comfortable.

I was very good about wearing the brace. I was supposed to wear it from 7am to 7pm each day, but since I had two activities that went until 9, I wore it for longer on Friday nights. I only missed wearing it a handful of times. My next few doctor's appointments were uneventful. My curve went from 32 to 36, but that was over a period of time and my doctor aid it could have just been the way I was standing.

Then in January 2003, I got some bad news. My doctor checked my back and ordered x-rays because he thought the curve had changed significantly. Sure enough, it had gone from 36 degrees to 44 degrees over the period of 4 months. My doctor suggested wearing the brace more, but we all agreed that was out of the question. None of my friends knew about my scoliosis, and I had no intention of telling them. Plus, I had absolutely no interest in wearing the brace to school, play rehearsal, and violin lessons.

The Surgery
We all decided that surgery was the best option. It was a big shock, since I had always thought my curve wasn’t very high. However, my mom and I agreed it was better than wearing the brace full time. The surgery was soon scheduled for July 9. We got a packet in the mail that had some information on the surgery.

My surgery was really far away, but I was still really nervous. After we got the packet we set the date for our pre-op consultation. That's when we sat with the doctor and asked him all our questions and he told us all about the surgery.

At the consultation, I found out that I was having an anterior spinal fusion. That meant the scar would be on my side instead of down my back. This sounded good to me, since it meant I would be able to wear halter tops and backless dresses without worrying about my scar showing. My doctor also said that I would have to wear a brace after the surgery.

I hadn't planned on telling my friends, but in May I decided I wanted them to know. At first I just told my good friends, but eventually I pretty much just told everyone.

On June 12, the day after I graduated from 8th grade, I went down to the hospital to get a tour, take x-rays and donate blood. I had already gotten my PFT (pulmonary function test). For that I just had to breathe deeply into a mouthpiece. I also had seen a pulmonologist because I have a history of pneumonia, which you can get after surgery.

The tour was first on our list. We were shown the pre-op waiting room, a regular hospital room, and a family lounge. Then we went into a more private room where we were shown a hospital gown, an IV, a mask that would be used to put me to sleep if they used gas, a PCA pump, and a bunch of other hospital things.

After the tour I went to the blood bank to donate blood. Before I donated I had to drink some more, because I was supposed to be very hydrated. Then we went into a little room with the person who would draw my blood to make sure I was healthy. I was really worried, because I hate needles.

In the room, I was asked a bunch of questions about what medications I take, what sicknesses I had had recently, etc. The woman also pricked my finger to test my iron. My iron was perfect, since I had been taking iron pills.

After the little interview I went and sat down. The plan was to draw from my right arm since I am a lefty. Unfortunately, there weren't any good veins in my right arm, so they had to draw from my left. I held a little squishy ball in my hand that I was supposed to squeeze every few seconds. I was nervous, but many people had said it didn't hurt, so I tried to relax. It really hurt when she put in the needle. After that I didn’t expect any pain, but I could feel the needle and boy did it hurt! The most painful part was after they had finished drawing the blood. They had to draw three test tubes to make sure the blood was safe. However, they couldn't get anymore blood. So I had to sit there while they prodded my arm, trying to get more blood out. The whole time I was trying not to cry, but I didn’t do so well and tears were streaming down my face. The woman who was sitting with me kept saying not to cry, because this was nothing compared to how painful my surgery would be.

After donating blood I went to the x-rays. Those were easy, but took a while, because I had to have about 10 of them. After x-rays I could finally go home.

Two days before my surgery I went to see my pediatrician to get surgical clearance. Then I was done with everything until the morning of surgery.

On the day before surgery, I went to a movie and did everything that I wouldn't be able to do for a while. The night before surgery I was sobbing. I was so scared. I kept telling my mom I wouldn't be able to go through with it. My mom gave me a soft stuffed frog (they're my favorite animals) that she had bought a long time ago as a little present. A bit after that I was able to fall asleep, only because I knew I would be exhausted the next day. I also ate right before bed, because I wasn't allowed to eat anything after midnight and I wasn't allowed to drink clear liquids after 4 am.

The morning of surgery I woke up really early. I was so tired. I made sure my bag was packed and I got dressed. I wasn’t allowed to wear any nail polish, so I had taken my toenail polish off the day before (I hadn't done a very good job). Then we were off to the hospital.

My surgery was scheduled for 7:30 am. So we got there at about 6:30. We went to the blood lab for my blood work. I was not looking forward to this, especially after my last experience with needles. Luckily it went fast and didn't hurt too much.

After the blood work we went to the pre-op waiting room. We checked in and the nurse showed us to my bed. I had to put on a hospital gown. I put one on the normal way and I put another one on over my shoulders to cover up my back. Then we just had to sit and wait.

As strange as it may seem, I wasn’t scared. I was tired and hungry and after a bit I was bored, but I wasn't scared. At about 7:45 all the doctors started coming in. first the child life specialist who had given us the tour came. Then the anesthesiologist and someone who was going to monitor my spinal cord came. I asked the anesthesiologist if she could use gas instead of an IV to put me to sleep and she said sure. The last person to come was Dr. Sarwark. He asked if we had any last minute questions and we said no. A bit later the nurse wheeled me into the operating room. I thought my mom was going to cry, but she didn’t. I said goodbye to my parents and the nurse wheeled me away. When we got to the OR one of the doctors put gooey sticky things on my chest. Then the nurses made sure the operating bed was locked and I scooted onto it. Then the anesthesiologist gave me the gas. She said it would taste kind of bad, but not too strong since it wasn't flavored. I didn't taste anything, but it was cold and made me cough. I was disappointed, because I had been looking forward to seeing everything fade as I fell asleep. All that happened was that everything was blurry.

Post-Op
I woke up as I was being wheeled down the hall to my room in intensive care. The doctors asked how my pain was and I told them that my back didn’t hurt, but my side did. I rated my pain at a 7 out of 10. When I got to the room my nurse introduced herself and started to hook my IV up to the morphine machine. Once I was hooked up I got my PCA button and pushed it. After a while, when my pain was still at a 7, the doctors changed the amount of morphine I was getting. Then my pain quickly went down to about a 4. Pretty soon after being brought into my room I got a mask that gave me humid air because the OR had been really dry and I couldn't drink yet. Right after my medicine was normal my parents came in. I don't really remember anything about that visit, except my mom was happy because I wasn't swollen. My feet were a bit swollen and my eyes looked like I had been crying, but my mom said I looked pretty normal.

I was pretty out of it in ICU. I would fall asleep for ten minutes and wake up thinking it was the next day. Parents aren't allowed to sleep in the actual room in ICU so my mom slept on a cot in the lounge. The nurse came in every hour to check my vitals. I also had a chest x-ray taken that night. Every time I was woken up I would ask the nurse what time it was (there was no clock in the room).

The next morning my aunt came to visit. She stayed for a long time, but I was only awake and alert for about five minutes of the time. That morning my nurse said I could have some Jell-O. I was surprised, because I thought I would only be allowed to have water and ice chips. I ate the Jell-O and the nurse even ordered me a lunch. However, the lunch was spaghetti and meatballs, which looked way too difficult to eat, so I just had more Jell-O and some sprite.

Later that day I was moved up into my regular room. The nurses had some trouble getting me into the room because it was so crowded. My roommate was a 16-year-old girl who had had the same operation as me a day earlier. I fell asleep the moment my bed was in place.

The next day I got to sit up. I sat up on the side of my bed and immediately felt so dizzy that I asked for a pan and threw up. The dizziness subsided and I was able to sit up for about 5 minutes. Afterwards I was so tired that I slept for a while. Later that day I got to sit in a chair. I first sat up in bed (this time I wasn't dizzy) then I stood up. I took a few tiny steps, then sat down in my chair for a bit. After a while I went to get back in bed. When I sat on the edge of my bed to get back in I got really dizzy and threw up again.

The next day I sat up for longer. This time my mom brushed my hair and put it up in a ponytail because my tight French braid had come out during surgery. Some navy officers came. They gave me a hat, which I gave to my brother who is obsessed with the military. They were leaving just as he came, so he was able to talk with them. My mom left with my brother so she could get a break. My dad was left with me. I had just been taken off of my continuous drip of morphine. I still had my PCA pump, but I needed Tylenol so that I wouldn't be in pain if I fell asleep and didn’t press my button. However, when the nurses changed my new nurse didn't give me the Tylenol, so when I woke up from my nap I was in quite a bit of pain. Luckily, I got the Tylenol quickly and after pressing my PCA button, I was fine again. After I felt normal again the physical therapist my dad helped me walk up a few stairs. We also walked a bit further than the day before. After I got back to my room I rested for a bit. A bit after my mom came back my roommate left. That night a new girl came in. She was five and had just been diagnosed with diabetes.

On Sunday, the 4th day after surgery I walked again. As always, I walked a little bit more than before.

On Monday, I started to get ready to go. After physical therapy the people in charge of my chest tube came in and yanked that out. It was so painful! Then I got off of the morphine. My nurse also took out the catheter. I was glad, because it wasn't painful, but it was pretty annoying and a bit uncomfortable. Later that afternoon I was supposed to get x-rays so I could leave the next day. However, in the early evening my pain started to go up. It had been at a 3 or 4 out of 10 all week, except for after physical therapy. Now it was at a 7 and it kept getting worse. We called the nurse and eventually we found out that what had happened was I had been given Tylenol instead of Tylenol with codeine because I was doing so well. After my pain kept getting worse my nurse gave me my Tylenol with codeine. I expected to feel better, but an hour later I was still in extreme pain. When I wasn't feeling better I was given a shot of morphine through my IV. Sometime during this chaotic mess I was fitted for a brace. However, going down for x-rays was out of the question. I didn’t get any sleep that night and I threw up a few times because morphine and codeine are hard on your stomach and I hadn't had anything to eat since lunch.

The next morning I finally fell asleep for a bit. I went down for x-rays. That was fun since I got to ride in a wheelchair. My nurse and my mom gave me a shower, which was wonderful, especially since I had only had sponge baths and that was what I had been expecting to get. I walked up two flights of stairs since I would be sleeping on our third floor at home. Then the brace guy came with the brace. At first it was too big, so he went back and refitted it. I had worn my old brace for so long that it had gotten relatively comfortable. This new brace was a bit different and that difference made it really uncomfortable. It also pressed on my ribs, which was really painful, since the doctors had gone in through my ribs.

After I got the brace we just had to wait for the discharge papers and then I could go. While we waited I watched some TV. After my mom signed the discharge papers and the nurse had given us instructions for at home my mom and I relaxed and played "hospital bingo" while we waited for my dad to come. My dad came very soon. My parents put my mom's and my stuff on a cart and I settled down in a wheelchair. The ride down was uneventful, but as we crossed the street to where our car was parked, we couldn't get the wheelchair over the curb. The nurse helped us and we were off! The car ride home wasn't as hard as I thought it would be. My back didn’t start hurting until we were about 2 minutes from home.

I got about an hour of sleep the next few nights. During the day I just hung around at home. I watched movies (I've seen about 50 so far) and chatted. My grandparents were in town that was nice because it gave my mom a break from me and it gave my brother and sister something to do when they were home from camp. My friends visited a lot too. The weekend after I got home (I got home on a Tuesday, this was the next Saturday) I started to get really sick of being in the house all the time. So I started making little outings, to Walgreen's or Target.

On the 28th of July, I went back to the hospital for my two-week post-op appointment. Here I got the great news that I didn’t have to wear the brace to school. I play the violin and I can't play it very well in the brace and I really can't play it sitting down in the brace, so I was very worried about what to do during orchestra. My intestines were still bothering me (the surgery and the medications after make you very constipated) so the nurse said I should take laxatives.

A few nights later my stomach was really bothering me, so my mom gave me a laxative. Unfortunately the pain just kept getting worse. My mom called the hospital and they said that I shouldn’t take anything more and I should just let my intestines get back in balance. So I did and now they barely hurt.

It is now 7 weeks since my surgery. I feel almost normal and it's really hard to keep my restrictions. The hardest part of this thing for me has been wearing the brace. It isn't comfortable and it makes me feel incredibly fat (in reality I am very slim). All I want to do is throw it in an incinerator and let it burn, burn, burn. At my last doctor's appointment I found out that I don’t have to put the brace on until I get home after school, which means I can do my after-school activities without it on. That was a great relief.

The surgery was hard, but it was the best decision I ever made. I never for a minute regretted the decision to do surgery instead of wearing a brace full time. Even in the hospital I was very thankful that I chose to do the surgery. I hope my story was interesting and not too long. Thanks for reading it!

You can find Martha on the SpineKIDS Message Boards.