Patient Stories

My story started in 1991. At 11 years old, I was hospitalized for severe dehydration (totally normal for me after nasty stomach bugs!). When the Dr. put the stethoscope on my back to listen to my lungs, he looked up and asked my dad if I had scoliosis. My dad had never noticed anything different, and I had never felt different. As an Italian girl, I had a faint hairline that ran from the nape of my neck to the bottom of my back. The dr. showed my dad how it was forming a C instead of a straight line. From there, he referred us to an orthopedic.

Enter Dr. William Dunham at Medical Center East in Birmingham, Alabama. I don’t remember much about the many appointments over the two years that I was his patient, but I want to say that he had not performed Harrington Rod surgery at that point in his career. I could be wrong…medical records have come a long way these days! We tried the Boston Brace first. The brace was to be worn for 23 out of 24 hours a day. I felt like Scarlet O’Hara from Gone With the Wind getting strapped into that thing every day!

I remember little things like my best friend, Kelly, getting to walk me to the girl’s room every time after PE to strap me in. And my favorite memory (as an adult, definitely NOT then!) was when the school said there was a tornado drill, and we had to all grab our math books and head to the hallway. I was in a uniform jumper dress with no shorts under it. I grabbed my math book and followed the line of students out of the classroom door. Usually during these drills, I got to sit out because the brace made it hard to get on the floor and lean over. I quickly realized that the school was trying to keep everyone calm by saying it was a drill when in reality it was a real tornado! In front of everyone, a teacher unzipped the back of my jumper, ripped my brace off and threw me into the hall with the other kids in my tank top and undies! I was mortified but thankful this was a super tiny private school.

After two years of bracing, my scoliosis progressed to an 81-degree curve and started affecting my breathing and my way of life. By 1993, Dr. Dunham said we needed to really think about surgery. I remember being excited because I had never had surgery and it sounded cool, and I was also ready to be out of that sweat inducing brace. I credit my dad with being cool as can be while on the inside having no clue what the future held. His demeanor and his breezy attitude towards getting me ready for this new surgery gave me a confidence and excitedness that I didn’t expect. The date was set. March 22, 1993. This shaped up to be quite a month and year for me! Not only did we schedule a surgery that would be new to the dr. and new to me, we ALSO had the crazy Blizzard of 1993 the second week of March in Birmingham, AL. We had to watch the weather and pray it would come and go fast so we could not only have our power restored but also make my surgery!

Luckily, it cleared up and life got back to normal. By life, I mean sports for my younger siblings and me getting all assignments I may need ahead of time. At one of the soccer games for a sibling, by dad took a spill down a steep hill carrying a cooler to the players and cracked a couple of ribs. My surgery was scheduled to be done two days later. We showed up to the hospital the night before and I was prepped and ready the next day. I remember the dr letting me see some of the tools he would use. I guess my face said it all because I remember I immediately got the “count backwards” request and I was out. My next memory was seeing my cousin Michele (closest thing to a big sister to me). I had a weird feeling that I couldn’t describe, but it was an extreme need to go swimming right away. I guess they gave me the strong stuff! My poor dad had to sleep on that hospital cot that week with cracked ribs! I remember waking up in the middle of the night and he would have to leave the room so I could have a nurse come in and use the female urinal since I couldn’t get up out of bed yet. He was such a good sport because I KNOW that was painful for him to move so much! After 9 days in the hospital, I was allowed to learn how to sit up and walk with my new hardware. IT HURT SO BAD! When I was able to lay back down, I felt like the new rods had popped out of place and were sitting on the outside of my sewn up back. I remember my favorite nurse Pearl sneaking me her potato soup as a break from the hospital food, my dad sneaking the Nintendo in for me to play and all my classmates coming to see me.

I was very blessed that the years after my surgery gave me no big issues. Minor pains and aches here and there, but nothing unbearable.

I led a normal teenage life with a full social calendar. The scar that replaced my little Italian hairline gave me confidence. The way I saw it, I did something nobody in my school had done!

Years later, I married and decided to start my family. My rods were a huge concern. I didn’t know anyone who had gone through Harrington Rod surgery and had babies. It was always a concern, but never a fear. I carried my first baby full term and surprisingly had NO ISSUES! THEN came time to have my baby. And this is what made me want to find a way to bring awareness to adult idiopathic scoliosis with and without surgery. The first birthing experience was quite a learning curve! Figuring out how to push when your back doesn’t arch because of the rods, having anesthesiologists argue over where the epidural should go and why it wasn’t working, having doctors who still ordered Pitocin with full expectation of an epidural taking all took its toll on me mentally and physically. Three years later, I had my second baby. Again, the pregnancy was easy. I learned to do natural birthing classes, breathing techniques, and I went to the gym right up until the week he was born. I was hoping a few years and having AT LEAST ONE Harrington Rod patient had opened a few doctors and nurses eyes. I quickly learned that it did not. I gave the anesthesiologist one chance to get the epidural in and then if it didn’t work, I was going for natural childbirth. Of course, the anesthesiologist couldn’t get the epidural in. By the time my third baby came years later, natural birth had seemed to become a norm. Lucky me! I was excited to try all of these new techniques and have doctors and nurses who accepted natural birth! BUT….i quickly learned that I could still not hunch over to push, the nurses who knew areas to put pressure to relieve labor pains could not do that to me because of either my curve or my rods.

Then came the task of being in my 30’s and losing baby weight with Harrington Rods. I hired trainers. They could not train me without injuring me. Nobody understood my limitations. So, I took matters into my own hands. I studied the body on my own. I learned every muscle. I learned how to modify each lift and each exercise program to fit my remaining 45-degree curve and my limitations because of my Harrington Rods. I eventually went on to get certified as a personal trainer and a specialization in corrective exercise. As I began training clients in a gym, I learned that there are SO many people who have back problems and a few who had fusions! I learned to train my core and really concentrated on that. I found a physical therapist that I loved.

With all of this said, if I could change anything, it would be the lack of awareness when it comes to scoliosis and scoliosis surgery. I would love to navigate a path where OBGYNs and anesthesiologists work with Harrington rod patients on birthing plans and look at and study their x-rays. Where they come up with a plan and execute it. Being able to have one amazing life changing experience not hinder another life changing experience.

I am thankful for the amazing Dr. Dunham, for my dad who slept in that hospital on a cot with broken ribs for me and who played Nintendo with me everyday because there was no internet back then, for my best friend Kelly who “strapped me in” daily at school, and for the friends and family who have picked my brain to learn more about scoliosis. Those friends and family members led me to find SSS and reach out. I thank God daily for the opportunity to share a unique story, sport a REALLY unique scar, and most of all for a successful outcome.