I grew up in the small town of Ada, Oklahoma. Our town is known for 2 things. #1. It’s the hometown of Blake Shelton, we went to high school together. #2. Ada High School has the most State Championship’s in football than any other high school. Go Cougars! But my scoliosis journey began before high school. It started in the 6th grade at Ada Middle School.
In those days, the school nurse would do a basic health screening each year consisting of an ear exam, eye test, and touching of the toes while they checked your spine. In 6th grade the nurse sent a note home saying I might have a slight case of scoliosis and we should have a doctor exam my back. Of course, we did not schedule a doctor’s appointment. We never went to the doctor’s office; we were never sick. In 7th grade, I didn’t get a note. But, in 8th grade they sent another note. Again, we did nothing.
Toward the end of 8th grade, my mother started noticing some odd things. She noticed I would be out of breath just walking home two blocks from the bus stop. We had walked those two blocks for years and I was never out of breath. We were very active and being very thin, I appeared to be a normal, healthy kid. In the summer between 8th and 9th grade, my brother and I wanted to be lifeguards at our public swimming pool. I passed every test except I could not hold my breath underwater the required 10 seconds. Despite several attempts, I just could not hold my breath. My parents were baffled. My brother and I spent every day at the pool. We were good swimmers and again, very active.
Not long after, my parents noticed that I appeared to be walking crooked. Although we were a close family, they had never realized how my stature had changed. Remember, this is 1980’s and big, loose t-shirts, sweaters, and sweatshirts were the style. But for me, this style had masked my scoliosis from those around me. My back had dramatically changed without anyone noticing. My parents knew we needed to see a doctor.
We scheduled an appointment with a doctor in Tulsa who put me in a back brace for 23 hours a day. Although the curves were significant by this time, the doctor felt a brace would help. I wore that brace every day for half of my freshman and half of my sophomore year. I continued in Color Guard and all the normal teenager activities. I did not let the brace hinder me in any way. Thank goodness for the 80’s oversized sweatshirt styles that hid the brace from everyone.
As the second semester of my sophomore year began, our local physician referred me to an orthopedic surgeon in Oklahoma City. Our first appointment with Dr. Andy Sullivan was in January 1989. In that initial visit, he said I would not just need one surgery, but two. The brace had not helped, and I also had a growth spurt which caused my “S” curve to increase. My curves were now at 85 degrees on the top and 58 degrees on the bottom. My ribcage had shifted and was compressing my lungs and heart. I recall Dr. Sullivan looking at my parents and saying I needed to have surgery as soon as possible and not just one surgery, but two. My parents wanted to wait until summer, but Dr. Sullivan insisted we scheduled the surgery immediately. I remember being so scared. I had never been in the hospital, never had a broken bone, never sick. We didn’t go to the doctor.
I checked out of school on February 28th, 1989, and checked into Oklahoma Children’s Hospital on March 1st. March 1st was spent running every test you can imagine. It was a very long day. My lung function was down to 40%. March 2nd, I had my first surgery. This surgery consisted of, cut me from under the right breast, around my side, up the back, to the top of my right shoulder blade. They took out a rib and removed most of the discs in my back. Removing discs required them to remove many of my organs from the chest cavity. They surgically inserted a tunneled central catheter with three access points into my neck that would stay until I would go home. They put my organs back and stapled me back up to complete the first surgery. I have IVs in my arms and a chest tube in my side. I spent two days in ICU and was finally moved to a room where I spent the next ten days recovering.
Recovery was brutal. All my organs were bruised. It hurt to breath. If my spine got out of alignment in the slightest, it was extremely painful. Someone could walk by the bed and the sheets would move causing so much pain. It was the worse days of my life. After several days, they removed the chest tube and a few days later, removed the staples. Recovery was hard but each day I got a little better.
Initially the second surgery was scheduled fourteen days after the first surgery, but I was recovering well enough to move the surgery up two days. On March 12th, I had the second surgery. In the second surgery, Dr. Sullivan cut me from the very top of my back to the very bottom of my back, straightened my spine as much as possible, and did a spinal fusion. Dr. Sullivan used CC rods, which were the new and innovative technology at the time, before they were using Harrington rods. This surgery was painful, but nothing like the first surgery. I spent less time in ICU and went to the burn unit before going back to a private room.
After the second surgery, my focus was going home. My mom spent every single moment with me while I was in the hospital. My dad and brother would drive back and forth every day after work and school to see us, an hour and a half drive each way. An ice storm hit that March doubling the time to make the trip. Through it all, I was focused on going home. I worked hard, never taking pain medication unless I absolutely had to. I needed to walk on my own and tolerate the pain with only oral medication to go home. That was my goal. I walked as much as I could. On March 18th, I walked to the hospital cafeteria to celebrate my brother’s birthday. That was one of the highlights of my recovery LOL!
On March 22nd, I finally got to go home. The recovery and pain were definitely not gone just because I got to go home. Dr. Sullivan thought I would be in the hospital a month, so I was thankful to go home in 22 days. Recovery was slow but I continued to get my strength back. I was allowed to go back to school for the last few weeks of my sophomore year. I carried a pillow to put behind my back. I was allowed to leave the classroom early and get to my next class before the hallway filled with students who might bump me. I was so glad to see my friends and teachers. After several months, I was released to some of my normal activities. After six months, I was totally released. I went back to Colorguard and competitive dance team.
Through it all, I have lived a totally normal life. This year will be the 34th anniversary of my scoliosis surgeries. Having the CC rods in my back has not hindered me from ever doing any activity. I married in 1993 and had our first daughter in 1996 and our second daughter in 1998. Both pregnancies were normal, healthy pregnancies. I was not able to have epidurals due to the spinal fusion, but thankfully Lamaze classes helped with the natural delivery.
Over the years, I have been able to speak with teenagers facing scoliosis. I’ve met several young ladies and their parents near our hometown who had been diagnosed with scoliosis. I would like people to know that if you are diagnosed with scoliosis, you will be okay. You can live a totally normal life with rods in your back. I also want to encourage parents to check your kid’s spines. Have them bend over, touch their toes, and make sure their spines are straight. Early detection is key. I checked my kids’ spines often while they were growing up. If you are diagnosed with scoliosis, find a good chiropractor or physician like Dr. Clayton Stitzel who can help get on top of it and hopefully prevent the disease from getting to a stage where surgery is your only option. There are many new treatments available now. Find someone who has walked in these shoes and can help encourage you along the way. Because, just like me, you will be okay.
Article by Bridgett Hall/Smith