The Patient is a 20-year Navy veteran from Limaville, Ohio with Parkinson’s disease he has lived with for 11 years.
on October 24, 2015 at 4:11 PM, updated October 25, 2015 at 7:57 AM
CLEVELAND, Ohio – Consider the brain.
To do this – to think about it, to picture it, to recall memories of the brains you’ve seen and what you’ve read about them — you have to use the very organ you are considering. The process becomes an M.C. Escher print, endlessly doubling back on itself.
Now imagine that brain exposed and still working. Imagine it being seen by millions of people, live, on television.
Sunday night, Greg Grindley, a 49-year-old man from Limaville, Ohio, will do just that.
Grindley’s brain contains vivid memories of the 20 years he spent in the Navy. His brain produces the deep emotions he feels for his wife, Crystal, and their four children (three his, one hers, all of them theirs).
His brain lets him experience his deep religious faith, a faith that drove him to start up and run, with Crystal, a food pantry that feeds hundreds of families in their economically shattered county.
On Sunday, Grindley will put this precious, damaged brain in the hands of a neurological team at Cleveland’s University Hospitals Case Medical Center. They will perform Deep Brain Stimulation on him, a surgery the members of the team have done hundreds of times.
They will drill two holes in his skull and insert electrodes into Grindley’s brain, hoping to relieve the jerking, shaking symptoms of the Parkinson’s disease he has lived with for 11 years.
Sunday’s surgery will be no different than those hundreds that came before, except for one thing.
In the first live broadcast on U.S. television of brain surgery, National Geographic Channel, in partnership with Mental Floss, will broadcast it from 9 to 11 p.m. Sunday from University Hospitals to 171 countries (some of which will view it live to tape), in 45 languages.
Grindley won’t be able to watch the surgery with the rest of the world. But he will be awake during it. He will be able to hear what the doctors are doing, and talk to them. When they ask him to move his hand, or his leg, he will be able to respond.
Most amazing of all, he will hear his own brain cells talking to each other.
Four cameras in the operating room will be trained on the doctors, nurses, technicians and Grindley. He will be center stage, surrounded by high-tech equipment, his head immobilized in a frame, the coordinates of his brain mapped in advance on a state-of-the-art 3-D imaging system.
Across the hall, in another operating room, Bryant Gumbel will host the show from a makeshift studio, aided by neurosurgeon Dr. Rahul Jandial and science educator Cara Santa Maria.
Grindley will expose his brain – the mysterious center of what and who we are as human beings – to the world and Bryant Gumbel.
To even contemplate this monumental undertaking – to find the words to describe his emotions as he imagines the surgery and then activate his vocal abilities to speak them – Grindley must use that brain in almost unimaginably complex ways.
A few days before the surgery, he put it to the task. When asked if he was scared, Grindley’s brain produced an answer befitting a man who spent 20 years in the military, where men are not supposed to talk about fear.
“It’s never been at the top of my list to have my brain poked around in,” he said. “You’re thinking Frankenstein or Herman Munster. But then I remembered that Herman turned out all right, so, OK.”
(It’s important to note here that Grindley has the complete “Munsters” collection on DVD. He also named his new basset hound puppy Lily, in honor of Herman’s smoking-hot wife.)
As for being awake during the poking, well, “I was a little leery about that.”
A diagnosis, a fear for the future
Greg Gindley first noticed the twitches in his right hand and triceps in 2004. He had just retired from the Navy and was back near his family in Ohio, working as an electrician. He was 38, single, with a daughter and two sons he loved taking into the woods to play paintball. He worked out, proud of the muscles he built.
And he was, after all, a man. So he ignored the twitches. Two years passed. The twitches became more frequent and intense. His beautiful muscles began to shrink, the first loss of many to come. Finally, he went to see a doctor.
“I heard the words ‘Parkinson’s disease,’ and I thought, ‘death sentence,’ ” Grindley said last week at his home in Limaville, a house that he and Crystal are renovating room by room. His right hand tapped an insistent beat on his left hand, his right leg jumped. His left side swayed his body in a dance to music heard only by his brain.
He knew nothing back then about the disease, which afflicts about a million people in the United States, but which for the most part remains an enigma to scientists, its causes unclear and its cure undiscovered.
But while Parkinson’s cannot be cured, it can be treated, sometimes with dramatic results. One of the most successful of these treatments is Deep Brain Stimulation surgery, a procedure the FDA approved for Parkinson’s 13 years ago.
Over the years, a doctor at the Veterans Administration hospital urged him to consider it, but Grindley wasn’t interested. He’d heard bad things. A friend had DBS and ended up with an infection, followed by more surgeries. On the Internet, people talked about even worse outcomes.
Then he met one of the physicians from the Parkinson’s and Movement Disorders Center at University Hospitals Case Medical Center. The doctor explained what was going on with his body in a way no one had before. He made the surgery sound less frightening.
A musician’s hands, a scientist’s passion
“Patients who come to us want three things,” said Dr. Jonathan Miller, the lead neurosurgeon on the team performing DBS on Grindley.
“No. 1: Keep me safe. No. 2: Heal me. No. 3: Be nice to me. In that order.”
It’s part of the Rainbow Babies and Children’s Hospital Culture of Safety Initiative, which Miller is involved with because he does pediatric neurosurgery at Rainbow.
Miller, a tall, gangly man who says he’s “5 foot, 18 inches,” has no problem with No. 3. He lucked out: He chose a profession that he loves, and, even better, he’s good at it.
He also plays classical piano, which he considered as a career when he was an undergraduate at Yale. But though he loves music, and is good at it, too, science won out over art. And as soon as he was introduced to neurology and the wonders of the brain, his path opened before him.
The enthusiasm he feels about what he and other neurosurgeons and neurologists can do for patients like Grindley – and what advances in research will make possible for other brain disorders in the near future – lights up his office as he talks about it.
“What we do is all about hope,” he said. “Our patients are not going to die of these diseases. They could go on living as they are, without the surgery. But we can give them a chance for a better life. In some cases, what we do can be life-changing.”
Miller is 40 years old and has been an attending physician, meaning he takes the lead on surgeries, since 2008. In that time, he’s performed hundreds of DBS surgeries and treated 4000 patients. Of about 450 neurosurgeons in the United States who do DBS, only 40 or 50, he estimates, perform as many as he and his colleagues do at UH.
Miller is also the director of UH’s Center for Functional and Restorative Neurosurgery, and teaches in the Case Western Reserve medical school. He talks fast and seems to be always on the move, and in the pajama-like blue scrubs he wears on the job, he looks like he might be a first-year medical student. Patients often wonder if he’s too young.
“It’s the braces,” he said, gesturing toward his orthodontia. When he was told he needed them, he knew he’d look even younger. “That’s why I grew the beard.” Now he looks like a sweet young man with a beard.
Miller knows he can deliver No. 2, healing, to most of his patients. The neurological team screens patients carefully, putting them through several tests, since DBS is not effective for everyone with Parkinson’s. With a good candidate, the odds are high for alleviating the slowness, stiffness and tremors, and sometimes stopping them altogether.
Grindley, he said, is an excellent candidate. The team chose him from among several they considered for the National Geographic show because they expect a dramatic result at the end. “You can never predict a home run, but he’s as good as it can get,” Miller said. “I think it will be transformative for him.”
But then there’s objective No. 1: Keep me safe. “The Hippocratic oath: First, do no harm,” Miller said. “In brain surgery, bad things sometimes happen. It’s part of being a surgeon; everybody has bad outcomes.”
In his specialty, that possibility looms even larger than in others, because the surgery is entirely elective. Not necessary. “We’re trying to give them a better quality of life, not heal them. So we have to be perfect.”
The risks of something bad happening are between 1 and 3 percent. “We can implant this on Sunday and end up causing a hemorrhage in the brain and cause permanent weakness, or worse, we could cause somebody to die. I’ve done 11 operations this week, and in every one of those, patients are going to live forever with the results. And that’s terrifying, if you think about it.”
Time and experience have made it much less terrifying for Miller. So does the team he works with, which includes Dr. Benjamin Walter, the medical director of the Deep Brain Stimulation Program and the director of the Movement Disorder Center at UH, and Dr. Jennifer Sweet, a neurosurgeon at UH.
“We spend many hours together before the surgery doing the mapping of the brain and targeting for the electrodes,” Miller said. “It’s a very precise, controlled, minimally invasive procedure.” By the time they’re in the operating room with the patient, all the advance preparation makes the surgery almost second nature.
Taking a chance to tame the tremors
Consider Greg Grindley’s brain.
Grindley’s brain betrayed him when he was 38 years old, far younger than most people who develop Parkinson’s. It started in secrecy, as most betrayals do. In the substantia nigra region deep in the middle of his brain, cells that produce dopamine began dying, for reasons scientists still do not fully understand.
Most people know dopamine as the Dr. Feelgood of the brain, the reward chemical, its levels increasing in response to sex, food, drugs, coffee and other pleasures. In the motor-control areas of the brain, though, dopamine acts as an agent to keep the system in balance between too much and too little movement.
When Grindley’s dopamine-secreting cells began to die, the brain lost its balance. Without dopamine, the neurons became hyperactive and erratic, firing off signals to his body willy-nilly, his body jerking and twitching in response.
At first, synthetic dopamine helped calm the symptoms. But gradually the medication became less effective, even as the side effects become more disruptive. Now Grindley takes them every two hours.
They calm the nearly constant twitches and tremors in his right arm and hand, bringing sweet relief. But only for 20 minutes. Then, in a kind of devil’s bargain, the side effects kick in, making Grindley’s left side wiggle and sway uncontrollably from dyskenesias.
Sunday night, Miller and the team, who all make key contributions, will carefully guide electrodes on ultra-thin wires deep into his brain. Listening to his cells “talk,” along with a 3-D map of his brain, will help guide the surgeons to what Miller calls “the sweet spot.”
When activated by a pacemaker the surgeons will implant in a week, the electrodes will send tiny electric pulses into the hyperactive nerve cells that cause Grindley’s right side to jerk and shake. The pulses will calm those nerves, subduing Grindley’s symptoms or, in a best-case scenario, stopping them altogether.
Grindley is trying not to get his hopes up too high. When the doctors asked him what he most wants out of the surgery, he said he’d like to walk without a cane.
If he could ride a motorcycle like he used to, and play paintball with his sons, and drive his truck all by himself to pick up and deliver food to the food pantry – well, that might be too much to hope for.
“It’s not a miracle surgery,” he said. “They told me that this is going to help reduce the tremors, but the disease is going to keep progressing.”
Miller always tried to manage his patients’ expectation, but with this patient, he is full of hope, full of his default mood of cheerful enthusiasm.
“That’s what this surgery is,” he said. “It’s all about hope.”
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