Scoliosis Stories

Written by a Teen for Teens

                                         

Carrie's Story

 

Hey, I’m Carrie. I am 18 years old and will be graduating from high school this June. I discovered I had scoliosis around November 2005 when I was in the middle of 8th grade. I have gone through 2 back braces and later had surgery December 2008 when I was in 11th grade.

 

This is the loooooong version of my story.

Like I said, I discovered I had scoliosis near the end of 2005 when I was 13. I was trying on a uniform for competitive cheer, and my mom was making sure everything fit, but then she noticed that my right shoulder blade stood out. I was currently seeing an orthopedic doctor for my knee which had been giving me issues, so on my next visit, my mom decided to ask about my shoulder blade. He looked at my back and immediately could tell I had scoliosis. He then gave me the referral to my back doctor which I still see.

I got an appointment with my back doctor that was scheduled about a month or two from then. On the day of my appointment, I went not knowing what to expect. When I arrived, the secretary sent me down the hall to radiology to get x-rays first. I was supposed to take off my shirt, pants, and bra, essentially everything except for my underwear, and then put on a robe. When they called my name, I was lead to a fairly dark room. They took some x-rays of me standing. They finally gave me the x-rays in a big, grey folder/envelope and told me I could go back and change. After about an hour there, I had my x-rays and had to walk them back down to my doctor’s. I handed them to the secretary and then waited for about two hours. It seemed like forever, but eventually, they called me back. I once again had to change into a robe. (Lots of changing is involved with scoliosis. I got sick of it very quickly.) I then saw the x-rays on the wall, and I immediately began to cry. It made me sad to actually see how my back looked. The doctors came in and talked to me. They explained what was happening and also gave me a whole box of tissues that they keep in every room. Apparently, I wasn’t the first patient to bawl their eyes out. They informed me that scoliosis is fairly common, more so in girls than in guys. They also explained that a lot of people either have it when they’re born or they get it during their teen years during a major growth spurt. That fit right along with my case; I had grown 3 inches every year for the past 3 years. They explained what curvature meant and that one of my curves was 35 degrees and the other was either 40 or 30. I can’t remember anymore. My doctor said that in my case, I could go for either a back brace or just go ahead and get surgery. He said that even with a brace, I still had a 50/50 chance of needing surgery in the end. Surgery sounded like the worst thing in the world, and I didn’t want to have anything to do with it, so I decided to wear a brace. They took some measurements. I don’t remember them specifically taking a cast of my body, but I’m sure they did something along the lines of that, and then they told me to come back in about a month. I could pick up my brace then.

A month went by and I returned. I looked at it and decided it was a hard, cream colored, plastic blob that somewhat resembled my torso. There were 3 straps on the back that had Velcro on the ends. The straps went across the opening in the back and hooked onto some vicious-looking metal prongs that held the strap in place. The Velcro just held the ends of straps down. I wasn’t able to reach the straps and attach them, so my doctor put it on me, and I could hardly breathe. It also really hurt to sit down because it forced me to sit up straight. I felt like I was being suffocated. They took it off just a couple of minutes later, and I was so glad to be rid of it. I could tell I was going to get angry with the thing quite frequently. I was to wear an undershirt beneath it, and then my regular shirt above it. I was told I was supposed to wear it 20 hours a day. I could take it off for showering and playing sports. They also told me to not get wet with it on (Although I went to Disneyworld a year later and rode the water rides, and it didn’t matter. I was just really wet underneath it for the rest of the day). They then told me to walk downstairs and go to another place in the hospital to another doctor who specialized in prosthetics and braces like mine. There, he could cut parts of it off and adjust it a little to try to make it more comfortable and to stop certain parts near the top and bottom of it to stop jabbing me.

 

Over the next 2 to 3 weeks, I added an hour of wearing the brace everyday. The first day, I was to wear it 1 hour. The second day, 2 hours… you get the idea. Eventually, I would work up to wearing it 20 hours. The doctor obviously knew it was really hard to get used to. I couldn’t bend in the torso at all because it was so hard. I could throw it around all I wanted (which sometimes I did during the first month because I was so mad), and it would never get bent or have any damage to it. It seemed to almost be indestructible. Finally, when I got to having to wear it at least 16 hours a day, I was forced to wear it to school. I couldn’t put off that dreadful day any longer. The first thing my friends did was punch me. They thought it was awesome that they could just punch away at my stomach, and I would barely be jolted. It was almost a game to see who they could get to punch me. Then, after the person complained that their hand hurt, they enjoyed laughing at how the person had no idea how I did that. Some people thought I had a book under my shirt, but clearly, my stomach was not flat and rectangular. After about a month, I was completely used to it, and I didn’t find it hard to breathe anymore.

 

For gym, I went to the nurses on my way to class and took my brace off and put it in a room. By the third week, I was able to reach behind my back and work with the straps by myself. My gym teacher had been informed that I would be doing this, so it was okay that I was five or so minutes late everyday. I would then head off to gym. Afterwards, I would go to the nurses once again and put it back on. For a week or two, I would get a pass from my nurse to go to my next class, but eventually, my fifth hour teacher didn’t care that I was late and just accepted the fact that everyday I was late because I was at the nurses. She never asked why.

 

For competitions, I did about the same thing. Before going to the warm up room, I would take off my brace and stuff if in a big bag. Then I would give it to my mom to hold until after I was done competing a couple hours later. I would then just go back into the bathroom and put it back on. Occasionally during practices, my back would really start hurting if I tumbled too much or caught someone at a weird angle during stunting, so my coaches would let me stop and go put on my brace until I felt better. I would just sit off to the side for a while. It was okay. They knew I was a hard worker, and they were very understanding.

 

For a year and a half, I would go back to the doctor every 4 months for my regular checkup. My back was remaining where it was. Every other appointment, I would get an x-ray or two. I rode roller coasters with it on and was able to do everything my friends did. The brace never had any restrictions except for being able to bend in the torso. Instead of bending over to pick something up, I just learned to squat and bend my knees. It forced me to have good posture. After a 3 week camp one summer, one of my preceptors wrote everyone in my class a note. In mine she commented that I had amazing posture.

 

The July before going into 10th grade, I got a new brace because I had outgrown my old one. The old one started digging into my hips. I had to get it adjusted once again to try to make it more comfortable.

 

Another year passed with the regular appointments every 4 months, and my doctor announced that I had stopped growing. I could take the brace off. He told me I could just stop, but being me, I felt the need to not stop immediately. I wore it at night simply because I hurt without it. My back had become really weak and wasn’t used to actually holding itself up, so during the night I would wear it, and it always made whatever pain I had go away.

 

However, when I went back later that year in October, I got x-rays again and they confirmed what I had been dreading: my back was much worse. Apparently, even after I was done growing, my back had taken that bad option of the initial 50/50 chance and had gotten worse. Although I could tell throughout the months before that dreadful appointment that my back was getting worse. The nerves between my shoulder blades kept pinching and sending a stabbing pain through my back. My curves were now about 60 degrees on the top and 50 on the bottom. I really had no option other than surgery. Two months later, I would get surgery. My doctor suggested I get surgery only on my top curve. This would allow me to have more flexibility in the end. Plus, my bottom curve would still automatically correct itself.

 

December 18, 2008: the date of my surgery. It was two days before the semester ended, so I would be missing 4 of my finals. Luckily, for two of those I had my favorite teacher, and he talked to the principals and my other teachers and managed to get me excused for all four finals. Instead of having to take them early, I wouldn’t have to take them at all! That really provided some relief. I was already nervous enough about the surgery. The week before, I had to go to an anesthesiologist and another doctor that performed some tests and measured my lung capacity. I also got some blood drawn.

 

My surgery was scheduled for 7 in the morning, so I had to be there about an hour early. It worked out well to have it that early because I was half asleep, so I wasn’t too aware of what was going on before they even gave me the anesthetic. I was taken to a room with the wonderful curtain that turns a cove into a “room”. There was a bed and lots of monitors and medical things. I changed into a robe and gave all my clothes to my mom. Because it was early, my friends were all at school before it actually started, so while people were jabbing IVs and other things into me, I was passing the time and keeping my mind off everything by talking to my friends. One nurse told me she just put the anesthetic into the IV, so I should probably get off the phone before I pass out and my friends wonder where I went. I hung up and was wheeled away in the bed. I was pushed into a room. The last thing I remember was “Hey, there’s my doctor!” and then I passed out.

 

Apparently, I had woken up in the recovery room later that afternoon, but I don’t remember that at all.

 

The next thing I do remember was waking up about 7 that night, and my back was killing me. I wasn’t aware of much, but I knew my back was really hurting. It was horrible. I talked to my mom for a couple of sentences, and then I fell back asleep until the next morning.

 

The nurse came in about 5 am the next day. She told me I had a button that I could press every 10 minutes and it would put some morphine in my IV to help with the pain. A couple times a day, an RN was supposed to come in a give me pain pills. I had hemoglobin bags and a catheter, and all I was wearing was a robe. Every morning, the doctor would come in and check up on me. I had to stand up. The first day, I only had to stand, but it took a really long time and more than one dose of pain medication. I had a walker because I wasn’t stable enough to stand on my own. Later in the week, I was walking down the hallway and back. I also had to walk up and down some steps. I got rid of the walker about 2 days before going home. I spent a total of 7 days (I think) in the hospital.

 

Because it was so close to Christmas (I ended up going home Christmas Eve), I decided to do something Christmas related, so I wrote my friends a letter on my 6th day in the hospital. I’ll give you a shortened version of it, but this just shows how out of it I was. By now, I don’t really remember much of the hospital. I suppose you won’t get a whole lot out of this letter, but it’s a day by day account of what I really remember about the hospital. Feel free to skip over the next 700 or so words.

 

“The Hospital wasn’t so bad.

 

The day of surgery, I don’t even remember.

 

Um, the second day, luckily, [my friends] came to see me. They brought me the Avatar finale, along with a dolphin balloon and…some other stuff I can’t think of right now. And before them, my pastor came and stood above me for I don’t know how long, until I woke up. When I finally came to, I opened my eyes and was all “There is some guy standing above me. Why is there a guy above me?” And I stared for a minute or so and finally was like “OH! It’s Pastor Roy!! Ugh, creeper”. Luckily, he only stayed for 5 minutes or so. Oh, and that day I had to get up and walk into the hall; it was horrible.

 

The third day, I don’t really remember what exactly happened on this day. They kind of all got mixed in my mind. Oh yeah, Joe, Geran, and Lauren came and saw me. We made fun of the channel that shows a fireplace burning 24/7 and some other things. This was the day I was [finally allowed to eat and was] trying to get down broth.

 

The fourth day, … was pretty uneventful…I think, except we did end up taking out the catheter and hemoglobin bags that day.

 

Yesterday. Yesterday was good. Well, ok. I felt great in the morning, but then the occupational therapist came by and made me actually use the toilet [for the first time], brush my teeth, wash my body, and wash my face and hands. Felt dead after all that. [2 of my friends] did come down though. They got me a flower with a card and they brought me my Christmas present! We played go fish while they were here. I had to go to the bathroom, so I made them all look away while I scuffled off towards the actual toilet. The rest of the day was pretty uneventful. I slept, I did eventually get out my laptop to watch avatar and Death note—there is no wireless where I’m at right now, sadly. Then I slept more.

 

Today, I’ve been writing for an hour. I’m surprised no nurse, or even the doctor, has come in yet. Normally, they have me up by 5:30. It’s 5:49 by now.

 

Now done with the play by play. On to more random things.

 

While I’ve been here:

 

  • I’ve decided that all people in respiratory are pricks.
  • I’ve decided all food service are incompetent, impatient, and can’t get orders right.
  • I haven’t worn underwear (or any clothes beside a robe, for that matter) for 6 days.
  • I’ve been on multiple narcotics, including types of cocaine, morphine, and possibly opium, which have, in fact, made me loopy.
  • The drugs have made me imagine different Nintendo looking characters in the ceiling tiles. On some I find myself thinking I could totally draw that. I want to draw that. No, I don’t want to draw that. I don’t want to draw right now.
  • I’ve had some weird and not-so weird dreams. The first one I remember involved people in the U-haul colors doing summersaults—and I specifically remember the u-haul part being in there. Some others have involved me with rocks in my shoes, only to wake up and realize that I could not have rocks in my shoes because I wasn’t wearing shoes, but I still felt like I had some on. Other dreams involved me talking about frogs or something, going downstairs, and talking about this blubbery stuff that you could make a milkshake with or use a soap that came out of a little black piano. And in one, my mom said that I’ve been talking more in my sleep—having conversations that kept getting more and more aggressive.
  • I’ve had these stockings on to prevent blood clots, along with bootie pump things that go up and down on my calves. Amber said they scared her. I don’t really think anything of them by now, but the first day, they didn’t have my size, so they gave me xL ones that went past my knees and had to be tapped on. The next day, luckily smalls came in.

Oh, and they’ve been taking two tubes of blood from me every night.

 

Note: this was written Tuesday, but I didn’t get out Tuesday because I kind of threw up for the first time in front of the doctor that morning. *note: don’t throw up in front of doctors when you’re trying to leave the hospital*

 

Tuesday: I felt bloated all day.

 

Wednesday: Hopefully I come home…and get some freakin’ internet!!!!”

 

I did go home that Wednesday. I was taken out to the car in a wheelchair, and my mom had to avoid all the potholes. Over the next 2 or 3 weeks, all I did was sleep, watch TV, and play X Box with my brother and his friends. I always felt really nauseous whenever I sat or stood up. I wasn’t allowed to get my back wet for the first 2 weeks at home as well, so I did sponge baths (like I did in the hospital) or I would put a back over my torso and put some cling wrap over the incision, while my mom bathed me. That was awkward. I would totally choose to give myself a sponge bath over doing that again any day of the week. I couldn’t get wet because they didn’t want my back to get infected. Also, I didn’t have any stitches or anything holding my incision shut besides little strips of tape all down my back. They slowly fell off over the next month. Everything I did, I had to do really slowly. I couldn’t do any sudden movements. I had no appetite for food, and nothing appealed to me except for Raisin Bran with strawberries, so that’s what I ate for 2 weeks until my stomach could handle other things. I had 2 weeks worth of oxycodone and then another 2 or so weeks worth of hydrocodone. After that, I was supposed to take standard Tylenol.

 

I saw the doctor 2 weeks after surgery, and he said everything was looking great. My top curve was reduced from 60 degrees to about 30, and my bottom curve, without any surgery on it, was reduced from 50 degrees to 37.

 

For two months, I wasn’t allowed to carry more than 10 pounds, so I had gotten 2 sets of books before surgery, one to keep at home and the other to keep in my classes. I finally was allowed to swim 4 months after surgery. At the 6 month post-op mark, I went to Mexico and felt fine. I played pool volleyball and didn’t hurt at all. It probably would have been different though if I had played normal volleyball. At the 1 year post-op mark, my doctor said I was finally allowed to go back to sports. The only things I would never be able to do were skydive, bungee jump, and tumble, which meant I had to find a new sport.

 

I remember at first, I was really self-conscious about my scar, but by now, I honestly couldn’t care less. I don’t mind wearing dresses with open backs or bathing suits by now. It’s nothing I can change, so I just have accepted it, which is saying a lot because I’m a really self-conscious person.

 

I was feeling fine. I played tennis one time and went bowling, but one weekend, I played tennis, lifted some really heavy buckets, and mowed for 2 hours, and my back hurt afterwards. I was really frightened that I had made my back worse; it sure felt like it. After all, my doctor had said that because I only had my top curve fused, I still had a 10% chance of the fusion not working, so my back could get worse. I couldn’t imagine having to get surgery again, especially right before I head off to college. I finally got an appointment that was a month away. Until then, the doctor said I should do some physical therapy to help the pain.

 

Finally, the month was up, and I was still certain my back was worse. It still really hurt. I got x-rays, and luckily, they showed that my back had not gotten worse. My doctor just explained that for someone who has had surgery, it’s easier to hurt their back and it takes much longer to heal after the injury than compared to someone who hasn’t had surgery. Duh, Carrie, that’s obvious. I was just relieved my back hadn’t gotten worse. So now, I’m doing physical therapy to get rid of the pain and to strengthen my back because my back is really weak by now. Eventually, I’ll start doing some light exercise. Hopefully, I’ll work back up to doing sports. That is, after I find a new one.

 

I’m supposed to see my doctor at the 2 year post-op mark, the 3 year mark, and the 5 year mark. After that, I’m done.

 

Yay, long story over and done with. I hope I didn’t forget anything, although I probably did…

 

Don’t hesitate to ask me anything!

 

Carrie 

 

 

Before SurgeryAfter Surgery

 

 

Thank you so much Carrie for letting me post your story!

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