major surgery at an early age 6.21.11
The first sign was pain. And constant reminders to stand up straight, not slouch. At first she thought she was just lazy, otherwise she would have better posture.
By the end of high school, my cousin, Laurie was in pain every single day. From after lunch to the end of the day, her back and head ached. At her mother’s insistence, she went to a doctor. And then another, and another. “We went to 7 or 8 doctors, and they all said I had a curve in my spine.”
Laurie had Kyphosis, a condition that can develop in a number of ways. Sometimes the bones in the spine wedge together and force the back into a curve. This is usually the case in adults who’ve had a serious injury or illness. In adolescents, the spine can grow unevenly, the backs of the vertebrae sometimes grow faster and become taller than the fronts. Sometimes the classic teenage slouch is a case of physiology, not attitude.
Most of the time, the fronts of the vertebrae catch up with the backs and the slouching teen becomes an upstanding adult, but not always. Between the ages 18 and 19, Laurie’s spine continued to fold forward. “The curve progressed by 10 degrees, which may be hard to picture,” she says, “but it was a phenomenal amount.”
Not laughing through the pain
My cousin has one of the quickest wits I know. Laurie cracks me up and makes me wish I could be half as funny, even though her jokes fall flat when I retell them. If I didn’t know better, I’d think her humor grew out of a medical ordeal that would make the Six-Million-Dollar Man wince. But Laurie was born funny. Her comedy and her back troubles seem unrelated — in fact, when Laurie talks about her spine, she doesn’t really joke about it.
There isn’t that much to joke about. Take for instance, the memory of seeing her teen self in a mirror. “I had rounded shoulders, my neck jutted forward and my chin stuck out,” she says. “I looked pretty terrible.” Standing upright took all her concentration and she could only hold the position for a few minutes at a time.
It dawned on her she had started avoiding things that would make her back hurt worse. As a college freshman, she could only make it through the first class of the day before the dull ache became a sharp, unbearable pain.
Happy birthday, surgical candidate
“They told me when I was done growing, around the age of 18, my spine would stop curving. When I was 19 they said, ‘now you are a surgical candidate,’ and started referring me all over the place.”
A typical mid back curves forward 20-45 degrees. According to the Scoliosis Research Society, when a thoracic spine curves 80 degrees or more and causes pain that doesn’t relent, it’s time to seriously consider surgery. Laurie’s mother, an RN, researched hospitals with spine institutes and decided on one almost 400 miles away. She and Laurie would go there for the surgery and remain until Laurie could travel again while her dad stayed home with her younger sister.
“I didn’t know what surgery would entail. It seemed kind of glamorous,” Laurie says. “I was all on board, thinking it would be easy. In reality, surgery was worse than I could have imagined.”
The surgeons screwed two rods into the vertebrae of almost her entire thoracic spine, from T2 to T12. Picture a girl’s back. Picture the space between the top of her T-shirt and the bottom of her bra. This is roughly the portion of Laurie’s spine that emerged from the surgery jacked up with hardware.
Recovery is no walk in the park
Over time, Laurie’s bone would fuse onto the metal and her thoracic spine would recover the strength it had mysteriously lost. But first, she had to get through recovery. Besides unbelievable pain, it felt like someone had nailed a 2×4 to her spine. “I was extremely aware of having something alien in my body and I wanted to get it out of me,” Laurie says. Of course, by then the rods were there to stay.
Laurie wondered how long it would take before she could get through one full day without thinking about the rods. She anticipated about six months. It took a year. Something as involuntary as shivering in the cold made her feel the rods. “It gave me the willies. I would want to throw up.”
Recovery also meant giving up her independence. “Surgery turns you into a baby,” Laurie says. ”You become reliant on someone else to do almost everything for you.” She felt like everyone — her parents, sisters, friends — treated her like she was made of glass. Each time someone did something for her, it reminded her of the rods, the surgery, and how little she could do on her own.
She continued to live with her parents after returning to college and had to carry around a special pillow to make the classroom chairs more bearable. “People would ask me, ‘why do you have that pillow?’ so I’d tell them, ‘I had major back surgery.’ And they’d say things like, ‘Wow… I went to Puerto Rico over my spring break.’”
Life with the rod
Nearly nine years have passed since Laurie’s surgery and now “the rod” is simply part of her. She says she has no memory of what it was like to not have a rod supporting her mid back, and would feel naked without it. The procedure worked out as hoped — within limits. Laurie will always have to be careful not to twist too much and be careful about what she lifts. Yoga is out, though she was burning it up on the dance floor at a recent family wedding.
Before I interviewed her for this blog, Laurie and I had never talked about her surgery. I thought I’d be invading her privacy. When we made a date to talk, I expected a story of horrible pain and harrowing recovery. Instead, she told me her story matter of factly, acknowledging that some parts were awful, but never dipped into self pity. When I asked her if she ever wondered why me, she said, “not really.” After all, both of her parents had back surgery, one of her sisters had jaw issues, the other has neck issues.
Thinking about her sisters, Laurie added, “I was glad it was me and not them. Amy is so active and Kerry is afraid of needles. It would have been much worse for them than it was for me.”
It’s important to Laurie that the surgery was her choice. “I weighed all the options. I knew it would be a life-changing decision.” And she thinks it might have been good she didn’t know how bad it would be. Being scared going in would only have made things worse.
Still, her experience probably does have something to do with the fact that she migrated to physical therapy for work and why she finds articles about joint replacements interesting. She worries that someday she might have to have the rod replaced. Even though she describes surgery without melodrama, Laurie seriously does not want to go through it again.
Made me tougher
Health is a funny thing. For some people, it seeps into their character, shaping their personality and coloring many of their conversations. This makes sense to me. Health is so basic, like hunger or thirst. If you’re in good health, you probably don’t think about it, but compromised health can become a constant distraction, a cross to bear, even a defining element. Yet this plays out differently for different people. Like the mystery of siblings with widely divergent personalities, it’s hard to know how a person will integrate health into her life story.
So did serious back problems and major surgery, all before the age of 20, make Laurie the person she is today?
She considers the question for a minute and then replies, “I think this experience made me tougher. I know I have a high pain threshold, probably higher than anyone I know. I know my body and feel in control of my body. I know when I’m having a good day and when I’m having a bad day.”
Laurie’s also gotten used to knowing when to ask for help.
“For the first five years, people treated me like I was made of glass and this got very annoying. Now that it’s been close to nine years, I realize I have to be careful. If I do something stupid, I’m going to hurt myself. I don’t know if it’s maturity or time but I’m able to feel grateful when people help me.”
Next: My Mother, My Nurse, in which Laurie’s mom talks about the surgery, and everything that led up to it, from her perspective.
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