Brain surgery:

The first step in prepping for DBS involves a brain scan. Surgeons use this picture to precisely map their target and to plan a safe path to it from an entry point on the head. Becky’s first scan, in August 2009, was a bust: She was not properly sedated and moved in the scanner, blurring the image and postponing the date of her surgery. The doctors were able to get a useable image after their second attempt, on 19 October. Four days later, on the same day as the surgery in Germany, they inserted four screws into her skull to anchor a ring-like ‘frame’ that would clamp her head to the operating table.

Becky walked around with those screws in her head for three months. On the morning of 29 January, her surgical team at Rhode Island Hospital in Providence, led by neurosurgeon Ming Cheng, attached the frame to Becky’s head and shuttled her to a scanner.

DBS is a fairly standardized procedure. Armed with brain navigation software, a surgical team chooses the entry point and maps the trajectory to the target they selected ahead of time. With the person asleep, they carve two dime-sized holes in the skull and thread hair-thin test electrodes to a spot about 15 millimeters above the target. Then, with the individual awake, they monitor brain activity to be sure the electrodes reached the right spot. The surgeon threads the larger DBS electrodes, the width of a strand of spaghetti, through the brain to that same location. After putting the person back to sleep, the team secures the electrodes under the scalp and closes the wounds.

In Becky’s case, the surgery went smoothly. By late afternoon the following day, she was home. On 4 February, Peirce’s birthday, Becky went bowling and earned a score of 66. The placement of the probes alone, without any stimulation, had had an effect. This improvement is common after DBS surgery, Sheth says, but temporary: Doctors have known for decades that creating a lesion in the brain can help with movement conditions, and inserting the probes creates tiny lesions.

A week later, Becky returned to the hospital for surgery to implant the battery-powered stimulators that deliver electrical pulses to her brain. Surgeons tucked each device into a pocket of space under her collarbone and then tunneled a wire from each one up the neck under the skin to connect them to the wires that thread through her brain.

Three weeks later, in Cheng’s office, a technician turned on Becky’s stimulator using a device resembling a television remote control that communicates with the stimulator in her chest. As Cheng adjusted the parameters, he watched for changes in her behavior: less hand-wringing or more communication, for instance. For some conditions, there are benchmarks for what has worked in the past. For Becky, it was true trial and error.

Yet two days later, Peirce posted on her Facebook page that Becky was “happy, talking and singing again!!” A week later, Becky won a gold medal at the Special Olympics winter games.

Over the following months, Becky spent much less time bathing, watching water at the sink and giving in to her other obsessions than she had before the surgery. But it was unclear what the stimulation was doing to her brain. The device’s current was set high and may have been igniting a confluence of neuronal pathways; that also meant Becky’s batteries were going fast.

By late September, Peirce noticed that Becky’s OCD-like behaviors, water use and eating were rising again. Peirce initially attributed the setback to Becky’s tooth pain. (Her teeth were decaying and she’d had several pulled.) But in early October, she brought Becky back to the hospital to get her batteries checked.

Cheng had left the hospital, so they saw his replacement, an eminent brain surgeon named G. Rees Cosgrove. Cosgrove was not surprised by Becky’s regression. “I wouldn’t have implanted her at all, because in fact she had such a broad number of diagnoses, it wasn’t clear what she had,” he says. He tested her electrodes and discovered that current wasn’t flowing through one of them. A subsequent X-ray revealed that a wire had broken in her neck and another had migrated away from its original target.

To fix it called for another surgery, and Cosgrove was resistant. Peirce, along with Becky’s care provider and teacher, told him that the surgery had made her better, but Cosgrove asked Gaitanis and Becky’s psychiatrist to write statements. An ethics board also weighed in and gave the procedure a green light.

Two weeks later, Cosgrove took out all the electrodes and scheduled to replace them in another two weeks. It was a long two weeks for Peirce: Becky was bathing and eating compulsively again, and her aggressive behavior had also returned.

The day after the surgery, on 4 December, Peirce called Cosgrove in a panic: Becky’s right cheek was grossly swollen and her eye was almost shut. He said the reaction was normal, but Peirce says that three days later he called her back with bad news: He was unhappy with the placement of the electrodes. (Cosgrove doesn’t recall this timeline.) Becky would need another surgery, scheduled for 13 January 2011. “They say third time’s a charm!” Peirce wrote on Facebook.

Cosgrove remained less than optimistic. “The cynical part of me said, ‘Well, I don’t believe this should have worked the first time, so I’m going to put them back in exactly the right place, the place that they worked [before], and let’s just see if we can reproduce this,” he recalls. “And we did.”

Again Peirce noticed a change even before the probes were switched on: Two weeks after the electrodes were replaced, Becky went to a Special Olympics bowling tournament. She got a strike on her very first practice ball and went on to achieve her best score in years. Peirce told Becky that she was “smoking,” which confused Becky. “I don’t smoke,” she told her mother.

Peirce was looking forward to seeing how Becky would do once the current was flowing again. On 2 February 2011, Becky and her mother navigated the icy roads to Rhode Island Hospital. This time, Cosgrove started her with a much lower voltage, but it still had a positive effect.

At the Special Olympics state championship that March, Becky had the stamina to bowl three games and then insisted on going to the event’s winter ball that night. Peirce had just bought Becky a new bowling ball as a reward for persevering through all the procedures. The ball was purple, of course, and sported a large stenciled image of Mickey Mouse.

As Becky’s behavior improved over weeks and months, it even swayed Cosgrove. “That sort of convinced me that, well, maybe this clinical improvement was real, and it is somehow related to the deep-brain stimulation,” he says.

The following March brought yet another compelling incident. Becky’s mother noticed that her OCD was surfacing again; she had developed severe sores on her hands from repetitive rubbing. When Peirce brought her to the hospital for a tune-up, it turned out her batteries had died. “Hello … more proof that the DBS system works!!” Peirce wrote later in a letter to the device company, Medtronic.

The company supplied Becky with long-lasting rechargeable batteries, which need to be replaced every 15 years instead of 2 or less.