They Say We are Made of Steel
My name is Amanda, this is but a small view into my life and what it’s like living with Scoliosis. This autobiography will take you through some of the struggles, fears, tears and life lessons that I’ve learned along this journey. My hopes for sharing my story, is to inspire others to stay the course and face their fears head on. The joke is once our spines are fused, we are now made of steel? I often wonder how much of that is true.
Growing up in North East Louisiana, my childhood was as normal as any other kid’s. I was very athletic, played softball, did gymnastics, took baton lessons and maybe even a dance class or two. Scoliosis wasn’t a word I was very familiar with, let alone spell it. But the summer before my 5th grade year (I was 12 at the time), my cousins and I were jumping on their trampoline. Somehow I landed on my right side and pulled a muscle in my neck. The pain caused by the sprain in my neck went from bad to worse. I remember staying home from school the following Monday and my mom taking me to see my pediatrician.
That fateful Monday, was the day I heard the word Scoliosis for the first time. My pediatrician’s daughter had just been diagnosed with Scoliosis and thankfully he thought to examine my entire spine and not just my neck. This is when he noticed a slight “S” shape in my spine. Being from Louisiana, some of the top doctors could be found at the Shriners Hospital for Crippled and Burned Children. So we made an appointment, and my mom, and I set out to the nearest hospital in Shreveport, LA. It was then, I learned my curves were 22 and 17 degrees at the time. What a difference a few weeks can make. Going from a nonstop 5th grader to hospital for CRIPPLED CHILDREN. What an awakening! I believe it was at that appointment, that I learned humility. There I was sitting amongst children in wheelchairs, some born with birth defects in their limbs and ME. How did I get there? Was I born with Scoliosis? Would it progress as I aged? Would my mom be a grandmother one day? All of these questions were running through my head. But at the same time, I realized just how much every child in that room had in common. Maybe my first visit was at an older age than some, my back brace wasn’t as noticeable as some of the other children’s prosthetics, but none of us knew the answer to “why me”? The selected few given a gift to either weaken up or make us stronger. At the Shriner’s hospital I was fitted for a brace. I remember wearing it to school 23 hrs a day! It wasn’t fun to be the one everyone looked at, so instead, I would talk, I would tell them what was going on. I wanted them to know that I and any other child with a deformity was NO different than they were.
Years went by and I continued to wear my brace. And to no avail, it did not correct my spine, and did not keep the curves from progressing. In the summer of ’94 my family moved to Jackson, MS. This is where I was fortunate enough to meet Dr. Pat Barrett. He was the top pediatric scoliosis physician in the state. He was such a kind physician who spend a lot of time reassuring me and my family that there was nothing that could be done other than to wear my brace and to “wait and watch”, meaning, wait and watch to see if the curves progress enough to warrant surgery. (A 30 to 35 degree curve was the magic number back then). So we waited, but not for very long. By the spring of my sophomore year, my curves had progressed to 35 degrees on the top and 32 degrees on the bottom. So what did that mean? Time to sign up for surgery!
I’ll never forget sitting in that room, and deciding a date for my surgery. With an 8-12 week recovery period, I wanted it done ASAP. I picked the very first opening, the Tuesday after Memorial Day. The plans were for Dr. Barrett to fuse me from T2-L3 or L4. To my doctor’s surprise, when he opened up my back and pulled the muscles free from my spine, my curves actually corrected themselves. I was almost CURVE FREE once it was all fused and 2-1/2” taller! What a feeling to lay down one day and stand up 2 days later taller than your mom. He used the clips and rods that everyone in the 90’s seemed to use, but there was one minor flaw in my surgery. My lower curve extended into my hips. Thus my hips would always be uneven and I would eventually need revision surgery to correct the last two vertebra that weren’t fused. I went back to see Dr. Barrett every few years and everything seemed to be holding up just fine. Other than a few aches and pains during college, I never had any trouble with my spine. Until one day, while working in the yard I heard a pop, I fell to my knees and knew something was wrong. Turned out I had developed a stress fracture (spondylolisthesis) due to the unnatural mechanics my vertebrae were forced to endure. So I returned to Dr. Barrett, and he told me to do EVERYTHING possible to keep from having surgery, for as long as I could. Well, after steroid injections, facet injections, Nerve Ablations, etc I was able to make it 8 years, which also included having a child. (I was put under general anesthesia during delivery for safety purposes). I knew revision surgery was lurking around the corner.
Finally in May of 2012 my fractured L5 vertebra had become so unstable that NOTHING would help. So in the same conference room where I sat almost 20 years prior, I scheduled my revision surgery. Dr. Barrett had retired by this time but his partner agreed to take on my case. July of 2012, I had my 6 hour revision surgery which included an ALIF (Anterior Lumbar Intrabody Fusion) with posterior hardware. In layman’s terms I was cut from the front, my L5-S1 disc was removed and replaced with cadaver bone. I was turned over, and they used pedicle screws and rods to fuse my last two vertebrae together. A few months post op, I began to feel a popping in my lower spine. About 8 months in I was back to taking pain meds, and trying everything to control my level of pain.
This is where my story takes a strange twist. At the time I was a pharmaceutical sales rep and was always on the go. I LOVED my job, but my body began to tell me to slow down. I didn’t listen and my body’s response was to begin running fever? It took me a while figure out that my system was suffering from adrenal fatigue, and my body couldn’t keep up with the demands the pain was putting on my adrenal system. My pain management doctors told me there was nothing left except for an additional surgery because now my OLD hardware was coming loose? Yep, another revision surgery. Seriously, I wasn’t even 1 year post op, when I found out. I tried my best to make it through the day, but my body fought back. It was such a horrible feeling to have the desire and drive to GO and DO, but my body just wouldn’t let me. This made of steel back was failing me yet again and depression and anxiety set in. I spent many days home sick in the bed, my world was revolving but I was stuck in bed! If you have ever seen the joke played on someone where they are duct taped to a wall, that’s how I felt. I was a 35 years old with a 7 year old daughter and couldn’t participate in her life and I had had enough.
So my search began for the best. I started local in MS, but none of the doctors seemed to be a good fit for me. If I were going to go through this surgery AGAIN, I wanted it done by a physician that ONLY did scoliosis and revisions surgeries. After a lot of research I found Dr. Michael O’Brien at Baylor in Plano, TX. Not only was he able to go in and remove some of the old hardware that was causing restrictions at the top of my spine, he also was able to give me a pretty significate lordotic curve. Which means no more flat back, I have a butt now!!! He also planned to correct my uneven leg lengths. All in all, he performed 41 separate surgeries within a 12 hour span, once again cutting me from the bottom of my breast bone to above my pubic bone. And on my back my incision is from the top of my shoulders to my tailbone.
So here I am, almost 4 weeks post op, trying to get used to my new center of gravity, my new more natural sway in my lower back and new range of motion in my neck. It’s amazing how advanced they have come in spine surgery. Now with even more STEEL in me, I feel freer than I did years ago.
Not all stories have a happy ending. It took me trying different types of medicine, dry needling, trigger point injections, multiple pain doctors, interviewing 5 different orthopedic surgeons (3 of which operated on me) to get to where I am today. No, I’m not pain free yet, but I feel a lot better and more stable than I have in a long time.
I’ve learned so many lessons about life throughout my journey. The empathy and compassion I still hold for those children that I met many years ago at the Shriners Hospital, I wouldn’t have that connection, had I not gone on this journey. Others who suffer with chronic pain, every day is a struggle and unless you have lived it, you will never understand it, so be supportive. Not every person that takes pain meds are taking them because they want to. Some need them to survive, so try not judge. My favorite “You don’t look like you hurt”? Can someone please tell me what hurt looks like? Yes, usually the smile on our faces are fake, we smile through the pain. But when you have no other option, what else can you do? You can either define your limitations, or let them define you.