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My Scoliosis Experience

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Ever since I was a baby I have had scoliosis.  Scoliosis is a condition where the spine curves more than normal.  Everybody’s spine curves a little bit, mine just happens to curve a lot more.  I wasn’t diagnosed with it until I was two and a half.  You may be wondering how I got scoliosis.  Well, my dad, his sister, and his brother all have scoliosis to some degree.  My dad has it the worst out of all of them. 


He chose to not have surgery when he was a young man because, back then, the surgery that was done was mind-blowing.  Surgeons would cut from the front, take many of the organs out, place screws and bars in the spine, return all the patient’s organs to their proper place, and then finally sew up the patient.  There was a fifty-fifty chance of being able to walk afterwards, and a fifty-fifty chance of him being able to go to the bathroom on his own ever again if he had gotten the surgery. The insane part of this process is that eight out of ten people who have scoliosis are female, but the likelihood of a father and a son to having it are fairly strong.


Growing up I would say that I was definitely challenged physically. I didn’t walk until I was 18 months old and I was always the slowest running kid wherever I went. Also, my back would hurt doing everyday things that aren’t supposed to make backs hurt (activities like hiking, running, standing up too fast, and more); but I didn’t care because I was just a little kid. There is one thing positive that came out of my having scoliosis, I think my pain tolerance is way higher than normal.  Most people think that my back hurts every day but I’m so used to it that it doesn’t even faze me anymore.


When I was young, the doctors wanted to do something on me called, “bracing.”  Spinal bracing is where a patient has a special “vest” built for them that fits their body size.  There are three Velcro straps on the back of the vest that are made increasingly tighter and that squeeze the patient to help reduce the curvature of the spine and to help stop the curve from worsening.  I wore a brace for about four years.  It was difficult for me because it made me do things like throw up and stopped me from being able to bend at the spine; I could only bend at the hips.  I was allowed two hours off from wearing the brace each day. Those two hours were like heaven on earth. They made me feel so good that at the end of the two hours I didn’t want to put the brace back on.


After about four years of bracing, my parents decided that I didn’t need to do it anymore because of how much I was suffering.  I was about seven-years-old when I stopped bracing for the first time. 


After that, my family consulted with a surgeon named Dr. King.  He was the best orthopedic surgeon in the area and had an amazing reputation.  He wanted to do a set of surgeries on me called growth bars.  Growth bars are a process where doctors put in screws and bars in a patient’s back but every nine months they needed to surgically readjust and lengthen the bars so that the patient can continue to grow. So, the patient would be basically just healing until the doctor decided that they were healthy enough to have another operation.  On top of that, the doctors weren’t going to allow me to do anything fun like playing on playgrounds, riding small engine vehicles, and jumping on trampolines.  I was so young that I didn’t even know what was going on.  My mother and father decided not to have the operation done based on the knowledge of the combined negativities of all the surgeries and not being able to do fun things.  Also, they thought that it wasn’t fair to me to make such a big decision when I didn’t even really know what was going on.


We didn’t see another orthopedic surgeon again until the summer of seventh grade when I was thirteen-years-old.  One day when my family and I were driving in the car I asked about surgery.  My parents both told me that they would support me no matter what and that if I wanted to talk to a doctor then that would be fine.  I thought it wouldn’t hurt to hear a surgeon’s opinion now that I knew what they were talking about.  It turns out that there was a new doctor and Dr. King had retired.  The new doctor basically implied that my parents were bad parents for not choosing to do the growth bars.  He was super pushy about me getting spinal fusion.  Fusion is a surgery where doctors take cadaver bone, screws, and bars to fuse the patient’s whole spine to make it one bone basically.  One downside of fusion is that the spine doesn’t grow anymore once it’s been fused. 


So, the doctor wanted me to return to wearing a brace for at least a year to try and stabilize my curve and get me to grow a bit more.  He wanted to stabilize the curve because the lower the degree of the curve, the better correction surgery could get with the fusion.  I went to my old friend Tom who I’ve known since I was three.  He is the man who made me all my braces; he is an orthotist.  Tom told me to request that the retired Dr. King sit in on my surgery. That is where he watches the new doctor perform the surgery and then gives him advice and guidance on what to do.  In a subtle way, he was telling me that the new doctor wasn’t the most skilled or experienced.  I began eighth grade wearing a brace.  It was hard because it dug into my armpits and made me feel uncomfortable all day.  Also, every day before PE I had to go the nurses to take it off.  After PE I had to go back to the nurses to put it on.


After about a month, my mom’s boss told her about this hospital called Shriners Hospital for Children.  It is a hospital where a patient must be referred to by a Shriner (a Freemason) and on top of that, the patient must be a candidate for the surgery.  My family got lucky because my mom’s boss’ husband is a Shriner and he referred us to Shriners Hospital for Children and I was a candidate!  There was one big issue though, the closest Shriners Hospital was in Salt Lake City, Utah.  We went out for an appointment and the staff took x-rays.  I was amazed to see how much my spine was curved. 


There are two main types of Scoliosis, C-curves, and S-curves. I had an S-curve. An S-curve is formed when there are two curves on top of each other forming an s shape, a C-curve is when there is one single curve.  Both of my curves at that point were around 60 degrees.  When we went to Shriners Hospital it was a whole different experience than before.  I met a very nice man named Dr. Heflin and he told us that we had no obligation to have the surgery and that if I didn’t want to then I didn’t have to. Also, he told me that if I didn’t have the surgery my dad is a perfect example of that. He said that with how good my dad is doing, he doesn’t even know if what he is doing is right. Can you believe that?  A doctor doesn’t even know if his practice was for the right cause. 


That appointment made me and my parents so impressed because we have never heard a doctor put himself in his patient’s shoes like that. That appointment really made me start to think. I had been thinking about the pros and cons of surgery, but I had never thought about the pros and cons of not getting surgery.  A huge con of not getting surgery is that my life could be shortened.  At some point, my spine will become so curved that it will literally crush my internal organs.  Also a pro of getting surgery is that I was old enough that I could get fusion which is like growth bars but you only have to do one surgery.  They informed us that if I did surgery I would have to spinal traction for 4 weeks before surgery, so I would have to do 2 surgeries.  Traction is where surgeons put screws part way into the patients head and add counterweights that are connected to the halo which is connected to the screws to slowly stretch out the spine.  They do this to decrease the chance of nerve damage and to get as much correction as possible.


After a lot of thinking, I decided to do the surgeries.  The first one was performed on March 21, 2017.  We went to Salt Lake City one day early just so I could get some good rest.  Then it was the day.  I woke up at 7:30 and we headed to the hospital.  At first I was very nervous and a little scared but then they gave me a pill to reduce my stress.  I don’t remember much but the last thing I remember is being wheeled into the operating room.  The traction surgery was a lot shorter than the fusion because all they had to do was partially drill 6 screws into my head and then put the halo on.  When I first woke up it felt like a dreamland. I felt this weird thing on my head that I couldn’t really feel because of the pain pills.  After a couple of days, it stopped hurting and I felt great.
Four weeks later was the big day.  On April 17, 2017, I woke up at 7:30 again and I wasn’t quite as nervous this time, I was more excited to leave the hospital.  The last thing I remember is breathing in the laughing gas. I remember it was root beer float flavor and I did it in one breath.  The next thing I remember is about 2 days later when I sat up for the first time. When I sat up I was super dizzy and my hearing started to go out and I felt like I was going to pass out.  That is because my blood pressure had dropped to 54 over 37 which is super low.  My mom later told me that the operation was supposed to take 4 hours but it took 8 hours. It took so long because when they were doing the final twist to make my spine straight, all the nerve sensors for my legs went blank.  So, they had to take all the screws and bars out and redo it. About 2 days after I sat up for the first time, I walked for the first time.  It was super weird because my body wasn’t used to my spine being where it is so I was really unbalanced. 


On the sixth day is when I went home.  That was my worst day of recovery.  We got in the car and I reclined in the seat and just fell asleep for an hour.  I on-and-off slept for a couple hours then we stopped to eat.  When we got out of the car it was the worst pain I had felt yet. I went in and ordered but could barely eat anything. We got back in the car and the pain didn’t go away.  I tried and tried to go to sleep but I couldn’t.  When we finally got home I got super sick and started throwing up.  Also, when it was time to go to bed I couldn’t get comfortable.  I didn’t fall asleep until six in the morning.  That was the worst day. 


Looking back on surgery, I am 100 percent sure that I’m glad I did it. I am currently recovering very well and can do more and more every day. I am going on walks every day and they get longer every time until I reach twenty minutes. I am going back to school next week to take some tests.
 






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