I have a not-so-dirty little secret that most people don’t know. I have scoliosis. To be more specific I have adult idiopathic scoliosis. They consider it to be adolescent onset because that’s when it was first noticed. It was during one of those supremely embarrassing times in the middle school locker room when some doctor or nurse had everyone take off their shirts and bend over so they could check your spine. I’m sure they probably didn’t line us up like cattle or anything but I vaguely recall feeling that way. I think they probably told me I needed to see a doctor, but they might have just given me a paper to take home to my parents that said “we think your kid has scoliosis – go get it checked out” in an official, medically appropriate way.
I was about 12 years old. My mom and dad took me to see an orthopedic doctor. It was a big deal at the time because we had to drive ALL the way to Knoxville from my hometown. I remember bits and pieces. I had to get undressed AGAIN. It was probably the second time I had to undress in front of people I didn’t know (the first being the school locker room). I was extremely self-conscience about my body at that age. We did have to change for gym class but I was an expert in doing that on the sly. My mom would try to make me feel better by telling me how they used to be made to shower after every gym class, with all the other girls showering too, everyone seeing everything. I hated that talk every time she gave it. I told her I just wouldn’t have participated in that as I was sure it was some sort of illegal abuse. She would just chuckle and say again “you should really be a lawyer when you grow up”.
So after putting on the paper gown and having my first x-rays, I was allowed to dress and join my parents. I can remember standing with the doctor and my parents in a small room and staring at the x-rays he hand hung on some sort of light box (I have no medical training, obviously). I don’t think I was scared. We were all surprised that my spine resembled the shape of an S because I really didn’t show much imbalance outwardly. The doctor went on to explain that scoliosis basically just happens for no reason, wouldn’t really effect me and there wasn’t much that could be done. He might have mentioned surgery to my parents but I don’t remember that part. What I remember is the doc making a joke that I had “good curves” which all the adults thought was hilarious but made me want to disappear under a chair since I weighed about 70 pounds and had no need for a bra.
My mom told me that she thinks he did recommend me wearing a brace but that I refused because I said that I would be the laughing stock of the whole world if I had braces on my teeth and a back brace on, along with being so underweight and underdeveloped.
The reassuring thing is that most research shows that even if I had worn a brace, it wouldn’t have made a lasting difference. The spine is going to go where it wants to go, no matter what hard piece of plastic, chiropractors, yoga, vitamins, mystical magical potions may try to do, if your spine is curved, it’s curved.
In my case, the doctor also mentioned that when I started having children I may have some problems. Well, I carried five full-term babies and did great with the pregnancies and deliveries. So, I’m not sure he got that right either.
What has worked against me the most is time. It’s been 26 years since that diagnosis and I’ve lost at least an inch in height since graduating from high school. I now have a Cobb angle of 45 degrees. I started having significant pain after I turned 32. Over the past six years I’ve gone to two different chiropractors which helped relieve pain for a very short amount of time but then it returned. I’ve had numerous x-rays and tried muscle relaxers and physical therapy stretches. Unfortunately, all of those are just temporary, mostly unsuccessful ways to address the pain.
Last year in the fall, my primary care doctor finally talked me into making an appointment with a neurosurgeon (which I thought was for the brain but again, no medical training). I had the first appointment in October after waiting six weeks to see that doctor he took one look at my x-rays and MRI and said “I can’t help you, you need the guy in our group that specializes in scoliosis.” He sent me home to wait for an appointment with the scoliosis guy and THREE months later I went to see him.
I knew what he was going to say, I actually held out some hope that he would. His said that he felt I needed spinal fusion surgery and that it would be better to do it now, while I’m still young (relatively speaking) rather than waiting until I am frail and hunched over at 65.
So here I am. Facing down spinal fusion surgery, scheduled for April of this year. It will be a long surgery, 8-10 hours, a week in the hospital, 2 months without driving, many months before I can be back to normal. I will have to be completely dependent on my loved ones to care for me. My husband, my mom, my children and my friends. If there is one thing that is the hardest for me it would definitely be accepting help. God knows what we need and I have to trust that He will bring me out of this surgery changed, not only physically but emotionally and spiritually.
The truth is I am excited about the possibility of being pain free or having less pain but I am terrified of what it’s going to take to get there.
All the Little Grubbs 