Diagnosis

I'm a 25 year old female with kyphoscoliosis. I was diagnosed at age 15 with a scoliotic S-curve (I don't remember the degree of my curvature). I was told by my doctor that I was too old for a brace, and that my curve wasn't severe enough to require surgery. He told my mother that we should just keep an eye on it. For about 2 years I got an x-ray every six months to check out my curve. Never got worse, never got better, so my mother decided she didn't want to keep putting me through pointless hospital visits and we stopped getting x-rays.

I remember having problems with it all throughout high school. There were a couple times that I had to get a doctor's note to sit out of gym class for a couple weeks because my pain was so severe. One of my best frenemies took to calling me "Hunchy", and my self esteem started plummeting.

For the past few years I have tried to ignore it, but my pain keeps getting worse as I get older. I have pain in my neck, shoulders, upper, and lower back almost all day every day. I'm not comfortable standing, not comfortable sitting, and only sometimes comfortable laying down in certain positions.

I hate how I feel, and I hate how my body looks, so in early January I made an appointment with a spine specialist for new x-rays, and to discuss treatment options. I was told my largest curve was at 36°, and prescribed physical therapy to reduce my amount of pain. I agreed to the physical therapy, but was unhappy with my diagnosis and requested a referral to a spine surgeon.

x-ray of my 36° scoliosis curve

After a month of once-a-week physical therapy appointments, my pain wasn't getting any better and I was frustrated. I called to make an appointment with the surgeon. At my appointment, they took some new x-rays before I met with the doctor. When the doctor came in, he asked me if I was only seeing him for my scoliosis. I said yes, and asked why, and he told me "You don't only have scoliosis. You have a condition called Scheuermann's kyphosis. Is this the first time you have ever heard this?"

.....What? How is it possible that I had gotten at least 8 x-rays as a teenager, and 2 recent x-rays which were looked at by a spine specialist, and NOBODY NOTICED THAT I HAD THIS CONDITION. My mind was blown. And suddenly everything made sense. All my pain made sense. Apparently my kyphosis measures 87°, which is more than double what a normal spine should be (between 20°-45°), and it is caused by the actual shape of my vertebrae. Mine are wedge-shaped, instead of square or rectangular, which causes them to fall forward on each other, and causes my spine to curve or "hunch" forward. Since my "natural" position is curving forward, I over-correct with my lower back in order to stand up "straight", which is what causes my exaggerated posture and my outrageous back pain.

x-ray of my 87° kyphosis curve

I was told my condition is fairly rare, quite severe, and will continue to degenerate over time. Which means I require spinal fusion surgery. I don't know quite how I feel about this. I have yet to settle on one emotional conclusion. I'm relieved that I finally have a real diagnosis and a plan for treatment. I'm terrified because I've never had surgery before (not even wisdom teeth!) and this one is fairly serious. I'm excited to finally have a straight spine, to love my body, and to no longer deal with excruciating pain on a daily basis. I'm nervous about how much it will cost me, how long my recovery time will be, and having to re-learn how to perform daily tasks.

So many feelings, so little time to sort through them all. I need to do some research, figure out stuff with work, part time disability, and my insurance, and then call to schedule my surgery.

I made this blog so I can document this process. Partly because it will help me sort through my thoughts and come to terms with everything that is about to happen to me, but mainly because I know how hard it is to find good resources about this online. If someone else with this condition finds this blog and finds some comfort in it, then my mission is accomplished. :) More soon!

Bent but not broken,

Robin