John Jerome's spinal cord shines white beneath the surgeons' headlamps, crisscrossed by a web of bright-red blood vessels. He's been on the operating table for more than four hours.
Above the fist-sized opening in his neck hangs a complex steel contraption. It's fixed in place by four posts: two wedged into Jerome's skull and two more in the vertebrae below the surgical wound. Invented by Emory neurosurgeon Nick Boulis, MD, it serves a single purpose: To hold steady the thin needle plunged into Jerome's spinal cord. If it breaks, it could kill him.
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A thin tube runs from the needle through the device and over to a small nearby table. At the table, concentrating intensely, Jonathan Glass, MD, is pumping stem cells into the tube from a small vial. On huge high-definition monitors, magnified images show Boulis plunge the needle directly into Jerome's naked spinal cord. The tube flexes. The doctors, nurses, technicians, and observers in the room hold their collective breath.
Glass counts down the time left in the infusion. Nobody speaks. The needle comes out. Boulis moves it a few millimeters, and coaxes it back into the spinal cord. Another vial of stem cells starts trickling through the tube.
A Deadly Disease
The journey that landed Jerome on that operating table started with a marathon. Like many runners training for a marathon, Jerome felt something go wrong with his stride -- and then there was this pain in his left knee. He underwent knee surgery, and the doctors told him the strength in his leg would return to normal.
It didn't. A year later, the same thing happened with his right leg. Over the next months Jerome's balance became less steady. And then his speech got noticeably slower. He checked his symptoms on WebMD. Then he made an appointment with a neurologist. He asked his wife, Donna, to come along.
"While he was doing some tests, he was kind of going, 'Mmmmm...,'" Jerome, 50, recalls, making that dreadful moaning sound you never want to hear from a doctor. "Then he goes, 'Well, I believe you have ALS, Lou Gehrig's disease.' I knew from going on WebMD I might have it. I hoped not. But that wasn't the case. It was devastating." He was 41 years old at the time.
Amyotrophic lateral sclerosis (ALS) is the disease that struck down baseball great Lou Gehrig and now bears his name. It's better understood as motor neuron disease, because these are the cells that waste away or die. They stop sending messages to the muscles. Eventually, the muscles that control breathing no longer work.
Neurologist Jonathan Glass now has treated about 2,000 ALS patients. He's writing a paper on what he's learned from the first 1,200 who died. He recently told a 45-year-old man with two teenage kids that he was going to die. For Glass, this was not an unusual day.