Paul Schafer’s hands would shake so violently that he couldn’t turn the page of a book, he couldn’t hold a glass of water without spilling, or brush his teeth without using two hands.
For more than a decade, Schafer, 74, of Agawam suffered from a condition called essential tremors, a neurological disorder that causes involuntary rhythmic trembling, and had struggled with the mundane tasks of daily life that most take for granted. So, when his doctor earlier this year told him about a brain surgery that could ease the trembling, he decided to go for it.
He wasn’t afraid of a drill penetrating his skull. He was ready.
“It was going to change my lifestyle according to what they told me,” he said. “So, my wife and I went out to the car and we said ‘We are going to do this.’ ”
Last March at Baystate Medical Center in Springfield, neurosurgeon Mohamad Khaled implanted an electrode into a cluster of cells in Schafer’s brain. A pulse of low voltage electricity surged through him, then like magic, the shaking was gone.
“My wife and I both cried,” Schafer said. “It was amazing.”
Schafer is one of Khaled’s first patients to undergo this type of deep brain stimulation surgery at Baystate. While the procedure has been available for years, there was no neurosurgeon in western Massachusetts capable of doing it, said Khaled, forcing patients to travel to other cities, like Boston or New York to have the procedure done.
Seeing a local need, Baystate recruited Khaled, who was trained at the Detroit Medical Center at Wayne State University and has performed hundreds of deep brain stimulation surgeries to treat disorders like essential tremors and Parkinson’s. Khaled who has been at Baystate for a little more than 10 months, estimates that there are 1,000 patients in the region who suffer from Parkinson’s and twice as many who suffer from essential tremors.
The surgery, Khaled said, calms the rhythmic gyrating, which is typically centralized in the hands.
“They get their lives back,” Khaled said of those who have the operation done. “Just imagine, your hands are shaking all the time. What can you do? …Imagine trying to hold a cup or a pen or anything.”
Schafer now has a wire running under his skin from a battery implanted above his collarbone. It is visible along his neck, bulging like a vein, and traveling straight to the electrode in his brain.
“It’s like a pacemaker for my brain,” he said.
A hand-held remote lets him turn the electric current on and off. He keeps it off when he goes to sleep at night to save the battery, which will last up to five years before he will need to have it replaced with a minor procedure.
When he first turns it on in the morning, he feels an odd sensation. “It’s like getting a shot of Novocain for the first second or two, except it goes through your whole body, your whole body tingles,” he said. “It’s really amazing.”
Schafer makes it look simple as he turns the device on and off, but getting the electrode into his brain was a complex process that takes place over a 20-day period with two surgeries.
First came the drilling of the holes in his skull to insert a few screws, which would anchor a 3D printed platform on the top of his head.
The platform, which is custom made for each patient, looks like a starfish. During the first surgery, it props up a motor, which drives the electrode into the brain.
Using submillimeter measurements, derived from computer software and finely detailed brain scans, Khaled moved the electrode into Schafer’s brain where it recorded the electrical impulses and firings from the brain cells. By observing these signals, Khaled could tell when he reached just the right spot where the malfunction was occurring.
“There is no target in the brain that is safe from a neurosurgeon,” Khaled said, “We can reach wherever we want — accurately.”
The drilling through the skull doesn’t hurt, it just feels like a vibration, says Khaled.
“Drilling in teeth is much worse than drilling in the skull because the teeth have way more nerve endings.”
While on the operating room table, Schafer was woken up so Khaled could see how the device’s placement affected his shaky hands. The doctor gave him a laser pointer and a target to do some tests.
“He tries to focus on that spiral and the hand is shaking all over the place. When we turn on the current and if we are in the exact right spot you see it suddenly stop,” Khaled said.
In that moment, for the first time in 15 years, Schafer’s hands were still.
“What you are doing is you are shutting down those cells — you override that problematic group of cells that are causing the chaos,” Khaled said.
This microscopic electrode is then replaced with a larger, permanent one, a little less than the thickness of a spaghetti noodle.
We take movement in our bodies for granted — you think about moving your hand and it just moves — but in order for that to happen there are very complicated pathways inside the brain that need to be functioning, says Khaled.
“As long as these circuits are functioning fine, we function normally. If part of that circuit or many parts of that circuit go haywire, then we develop diseases,” he said, including mood disorders like depression and schizophrenia or suffer from memory loss with Alzheimer’s Disease. “Same thing for all the brain functions,” he said.
While there are theories about how and why these pathways work, scientists are still guessing, Khaled said.
“We don’t exactly understand the exact fine details of the circuitry and what goes wrong with them, but we have lots of different theories,” he said. “Based on those theories of how things go wrong, we target parts of the circuitry to alter that function.”
Deep brain stimulation surgery is one way to combat many of these common problems, but not all of them have been approved by the FDA like the treatment for Parkinson’s and essential tremors that Khaled performs.
He says that seeing the positive outcomes of these surgeries is one of the best parts of his job.
“To be able to deliver good news and see the results of my work and to see people’s lives getting better, it keeps me going,” Khaled said.
Schafer said he felt no pain after the operation. When his wife, Kathie Schafer, stood over his bed after the second surgery to implant the battery, she says, she cried when she realized he would now be able to make a toast at his son’s wedding without the spilling the champagne.
“The changes in him have been miraculous — it puts him at ease — it decreases the stress in his life,” Kathie Schafer said.
Over the course of his illness, Schafer’s medication had slowly stopped working, Kathie Schafer said. With every day that went by, the shaking got worse, and it became more and more obvious that his condition was declining.
At dinners with friends, she had to serve food for him so that it wouldn’t spill. His handwriting was so illegible that checks would get sent back.
“I think the most important thing for me was for him to have his dignity back,” she said.
Now as they go about their lives, Schafer can do the simple things that were once so out of reach.
“I thought it was going to work, but I didn’t know how good it was going to work or how it was going to work,” Schafer said. “I was amazed.”
He no longer struggles at his part-time job as a food broker, taking merchandise on and off the shelves at local stores. He can button his shirt or lay in bed with a good book. He can bring his wife a tray of cookies, tie his shoes and comb his hair.
“If you are with someone and you care for them, you want nothing but the best for them, so watching Paul struggle was very hard for me,” Kathie said. “So when we found that there was a way to help him, we took the risk because what else is there, that’s what you do. I think it puts hope out there for an awful lot of people.”
Lisa Spear can be reached at lspear@gazettenet.com.