Hello. My name is Cayla Hall.
I was diagnosed with scoliosis at 8 years old.
At age 16 I had invasive spinal surgery to stop its progression.
This is my journey.
I don’t remember the early years of living with my condition simply because it didn't affect me. I didn’t experience pain; the only sign was my uneven shoulder blades.
When I was diagnosed the x-ray of my spine measured a curve of 12 degrees. It didn't seem so concerning until my doctor explained that most children are diagnosed at 12 years old with a 3-4 degree curve.
In the early stages of scoliosis, there are no treatments available. The doctor simply says "Wait and see, maybe you won't get worse. Come back in a few months for another x-ray." So I waited.
I do not have the words to explain what felt like as my spine deformed further over the next few years. As the curve increased in magnitude, the muscles on each side of the spine were permanently contracted or overstretched. Muscles that felt tight at first started to ache. Eventually, I began to feel pain.
It was a daily, persistent pain from which I found no relief. I woke up with it and went to bed with it. My curve measured 29 degress when I was age 12 - when most patients are first diagnosed with a 4 degree curve.
And still, I waited.
Less than a year later, my spine measured 33 degrees in the upper curve with a small 15 degree lumbar curve. Smaller secondary curves often develop naturally to counteract the imbalance and are a sign of a more complicated case. My doctor recomended the next stage of treatment - a Boston Brace.
Bracing is a popular non-surgical treatment for scoliosis around the world. A Boston Brace is a system of pads and cutouts built into a plasic shell that is strapped tightly to the body. The compression temporarily straightens the spine. If succussful, the brace is worn until the body stops growing and the curve stops moving.
It is the worst form of torture I can possibly imagine.
For 16 hours a day I sweated and itched and cried. I can remember moments of intense panic that threatened to consume me. It faded when I was out of the brace, but alway returned when it came time to strap it back on. The long term compression made me anxious, claustrophobic, and sensitive to touch which continues to this day. Wearing that brace felt like suffocating.
I never missed a day wearing that brace, no matter how much I hated it. After a year and a half, however, I was getting worse and running out of time.
So we got a second opinion, where I heard four pieces of the worst news I have ever received.
- The brace had no effect. It had accomplished absolutely nothing.
- My upper curve now measured 42 degrees, my lower 30 degrees.
- It was highly likely I would need spinal fusion within 2 years.
- I had to wait. Again.
There was a shred of hope dangled in front of me at every appointment. As my pain increased to deafening levels and my curve continued to get worse, I was told over and over again that there was a chance my spine would stop moving. It was a desperate wish that one day an x-ray could bring good news. It was always a false hope.
Shortly after my 16th birthday, I was told by my doctor to set a surgery date within the next 6 months. If I didn't, my spine would start to collapse which would compress my lungs and I would be forced to have emergency surgery.
I knew he was right. My pain worsened daily and my curve was so severe that I had developed a fracture between two vertbrae in the middle of my back. I was living my life, but it was only becoming more difficult.
Spinal fusion for scoliosis requires the installation of metal screws into the "wings" of the vertebrae. Metal rods are interted through the tops of the screws to straigten the spine. The actual fusion occurs when bone grows around the hardware, but that doesn't happen until about one to two years post-op. It is a difficult surgery and a difficult recovery, but I was out of options.
Leading up to the surgery, I battled with what I now recognize as anxiety attacks on a weekly basis. I was terrified of surgery. Terrified of what my life would look like afterwards. Terrified of the surgery going wrong. If it did, I could be paralyzed or even die on the table. There was the risk of infection or the fusion not 'taking', which meant undergoing another operation. There was so much fear...
My family was beside me every step of the way, supporting me as best they could. In my head though, I was alone. No one else was going in the operating room. No one else would emerge with 2 pounds of metal fused into their spine. No one else could go through what I had to face.
My recovery was much like taking my first steps in the hospital - small and slow, but steady.
For the first several weeks, I stayed on a constant and highly monitored dose of narcotic pain medication and muscle relaxers just so I could function. I couldn't walk without holding onto someone, and getting up from a chair or laying down in bed was its own special challenge.
The hardware is most fragile during the first 6 months. That means no twisting, no curving, bending, or arcing and no load bearing. Day by day I felt a little better, moved around a little easier, and life began to move forward.
It has been almost seven years since surgery, and I desperately wish I could say that I am perfectly fine. I am not. I have limited movement in most of my spine which makes life difficult at times I still have pain on a daily basis. My pain contributes to lingering stress and anxiety and makes it easy to fall into a depressive state. I have a deep seated hatred of my body's deformities that has caused more than one anxiety attack.
Most of my life has been shaped by scoliosis and I live every day wishing that I could wake up without it. I dream of a non-existent day where I find myself whole and healthly, no longer broken, deformed, or fractured.
My emotional healing is obviously far from finished and I still struggle to find the reason for my pain. I can, however, share what scoliosis has taught me.
I have learned what it is to live under a cloud of fear and get out of bed anyway. I have learned that the body is capable of withstanding intense pain and still survive.
I have learned that scars can be beautiful.
I am thankful everyday for the compassion, strength, and determination my spine like steel has brought to me. However much I wish, I cannot change my past. I cannot convince my body to straighten, but I live in anticipation of how I can shape my future.
One of the important facts to remember about scoliosis is that every case is different. Although this is my case history, your story maybe completely different. If you or a loved one has been recently diagnosed, educating yourself is the best action you can take right now.