Very little was spoken about what to expect after the surgery. I thought I understood and just said, “Let’s do it.” Spinal surgery would be a new experience, but I trusted my instincts. The lumbar fusion took about four hours. Two days later I fled the hospital, anxious to sleep it off in my own bed and return to a busy life. I was in pain, but so what? No one was happy with my hasty retreat, but physician and family knew better than to try to talk sense into me. Meredith, my wife, could only mutter, “I hope you know what you’re doing.”
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Before surgery, the pain was razor-sharp. Every step was a nightmare. My back was on fire. The crisis had started years earlier from a herniated disc in my lower back. That pain had festered through the years as I developed spinal stenosis — a narrowing of the spinal canal — with vertebrae pinching nerves in some places and creating bone-on-bone pain in others.
My prognosis was clouded by my multiple sclerosis. No one could say with certainty how successful the surgery might be, because they didn’t really know which piece of the physical deficit was muscular and which was neurological. In spinal surgery patients with MS, neurological function does not always return.
After an uncertain first few weeks post-surgery, when the pain seemed almost unbearable at times, everything seemed to be getting better. I was just about ready to rejoin the world outside when I arose one day to discover that my back was so weak I could barely stand straight. I could not walk more than a few feet without finding a surface to lean on. I couldn’t even carry a cup of coffee or a glass of water into the next room. This new normal was a body hunched over, looking as if it would fold in half and crumple to the ground.
This went on for weeks. I freaked. I told my neurologist I was having an MS flare. Frequently, the patient is the first to sense trouble, so my problems were taken seriously. I had four consecutive days of steroid infusions at an MS center, where drugs were pumped into my body to reduce inflammation. On the final day, I was dropped off less than a block away from the clinic. I barely made it to my appointment, collapsing in the doorway.
But the real question remained: Was I having trouble recovering from the back surgery? Or was the situation more ominous, with my MS becoming increasingly difficult to control? Could it be that the nerves in my back were misfiring and the large muscles that support my spinal column were failing to receive the proper signals?
“I’m having a relapse,” I told Meredith, having little factual basis for the claim. My worst fears were at work, and the wheelchair in my mind’s eye was inching closer. My surgeon argued that I was only recovering from the surgery. But then why had I been getting better, only to suddenly get so much worse? There was no way to know.
Have you ever found yourself having to start over, to go back to the starting line to begin again? That’s how I felt, only the starting line had been moved. Lately, it seems, that starting line is a moving target, slipping further and further behind where the other runners start the race.
Walking like an 85-year-old does not put a bounce in your step when you are just wandering into your 60s. I have to find a new way to cope, at least in my head. I always try to remember that who we are resides north of the neck. The identity of a basketball player is in his soul, not his sneakers. This container of mine is flawed, but the contents remain sound.
In typical fashion, my questions came after the spinal surgery. Only then did I begin to appreciate how long the recovery takes. The role of physical therapy became clear. I learned that PT could take up to eight months for this type of operation. And I am not your average back patient. I am carrying multiple sclerosis into every therapy session.
Now, months post-surgery, I still have pain, and I still wonder: Am I having a relapse or a persistent problem healing? Will I mend or will I forever forward have to grasp solid, stable objects as I walk? I will dwell on that during many sleepless nights.
Emmy-winning TV producer and author Richard Cohen has lived with multiple sclerosis for more than 30 years. He writes bi-weekly about living a full life with a chronic disease.
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