There came an extraordinary moment about a third of the way through the brain operation being performed on Brad Carter when the 39-year-old actor and musician was woken up, handed a guitar, and he proceeded to play a couple of songs he had written called Henrietta and Drunk Again.
With his shaven head immobilized in a metal brace and draped in a blue surgical towel and plastic, he finger-picked the box-shaped handmade instrument and sang, while the operating-room staff worked around him.
“You take my hand/we’ll go runnin’ crazy/down in Dixieland. We will dance and sing/we won’t ever worry/worry ’bout a thing.”
As he played and sang — and throughout the six-hour-long procedure this past May — the progress of Carter’s surgery, as well as images of him in the OR, were tweeted around the world.
That Carter was awakened in the midst of the operation and directed to perform specific tasks was not unique (though playing a guitar was); his was the 500th operation of this type performed at UCLA, a so-called deep-brain-stimulation surgery to implant electrodes in his brain (which would be followed a couple of weeks later by a pacemaker-like device) to calm his tremors. But it was the first time that UCLA Health invited the general public into the OR via social media to observe such a procedure as a way to educate people about deep-brain stimulation. In addition to live-tweeting, with Carter’s permission, UCLA posted Instagram photos and six-second video clips of the operation via a Twitter application called Vine. The event went viral, landing in the news feeds of millions of Twitter users and attracting widespread attention from conventional news media. While other institutions have live tweeted surgeries in the past, this was the first time in the United States that a procedure had been broadcast with video clips.
The power of social media is well-recognized by healthcare institutions, and more and more UCLA Health has taken steps to tap into that audience. “The idea of live-tweeting a surgery was something we had wanted to do, but we were waiting for the right opportunity,” says Ashley Dinielli, social-media and Web strategist for UCLA Health, who sent out the tweets, videos and photos throughout Carter’s operation. “It’s not every day that a patient plays guitar in the OR,” Dinielli notes. “This was a chance to let people see something unusual, while at the same time educating them about the surgery.”
For Nader Pouratian, MD ’03, PhD ’01, director of UCLA’s Neurosurgical Movement Disorders Program and the surgeon who performed Carter’s operation, such a development is “a sign of the times.” But at the same time, Dr. Pouratian says, “this is an extension of what we do at UCLA. As a teaching institution, we’re used to having medical students, residents, fellows and visitors from other parts of the country and around the world observe our surgeries and learn from us. We thought this would be a great opportunity to bring the world
into the operating room and teach people about deep-brain stimulation.”
There were two target audiences that Dr. Pouratian wanted to reach. The first was the general public and the many people who are intrigued by the idea of brain surgery, particularly when the patient is awake. But he considered the second audience even more important — potential candidates for the surgery. Dr. Pouratian hoped that by tweeting Carter’s operation, others with similar movement disorders, such as essential tremor or Parkinson’s disease, would see that there could be another option for them. And for those who knew of the procedure but were afraid, he hoped seeing it might alleviate their apprehension. “Our thought was that bringing them into the operating room to see what it’s like would demystify the procedure, showing them that it’s not as anxiety-provoking as they might imagine it to be, so that they might benefit from a therapy we know can help people,” he says.
Deep-brain stimulation functions like a heart pacemaker. But instead of going to the heart, the electrodes are strategically positioned in the brain. The pacemaker itself includes a chest-implanted generator that sends continuous pulses to the electrodes to correct the abnormal patterns of activity in the brains of patients with neurological disease. In Carter’s case, the abnormal activity and the involuntary movement they caused were the result of essential tremor, which he first noticed in 2006, beginning in his hands and eventually progressing to the point where he could no longer do many of the things he loved most, like play the guitar.
Since it was first performed about 20 years ago (it was approved for use in the United States in the late 1990s by the U.S. Food and Drug Administration), some 100,000 people have undergone deep-brain- stimulation surgery throughout the world. While most often used for patients with Parkinson’s disease or essential tremor, it is also FDA-approved for a third movement disorder, dystonia, which is characterized by sustained involuntary muscle contractions, as well as for obsessive-compulsive disorder.
In the U.S., an estimated 10-million people have essential tremor, and 1 million have Parkinson’s disease. Although tremors are a characteristic of both conditions, for Parkinson’s they occur predominantly at rest, whereas people with essential tremor tend to experience their symptoms when they hold out their arms or are engaged in an activity. (Parkinson’s disease is also characterized by other symptoms that patients with essential tremor don’t experience, such as stiffness, rigidity and slowness of movement.)
There is no cure for either condition. “This procedure doesn’t change the underlying disease,” Dr. Pouratian stresses. “It doesn’t change the time course or the progression; it’s purely symptomatic.” Medications can also serve to relieve symptoms, and they are the first option. But for patients who either don’t get satisfactory benefits from their drugs, experience complications from them that can’t be managed or have intolerable side effects, deep-brain stimulation can become an attractive option.
“We are fortunate in our field to have very good studies — randomized controlled trials — that show this to be an excellent therapy,” says Dr. Pouratian. “There is significant improvement in quality of life with the surgery, well beyond what patients get from the available medications. It’s not a cure, but it’s quite clear that they spend much more of their day in a better condition — able to participate in many more activities and to enjoy their lives more. One of the most powerful comments I hear from many patients is that they wish they had done it earlier.”
An involuntary tremor would be unwelcomed for anyone; for Carter, a native of Georgia who moved to Southern California a decade ago to pursue his acting career (you might have seen him as a forlorn customer in a Progressive Insurance television commercial or on an episode of House MD or CSI: New York), it was a particularly cruel stroke. In addition to acting, Carter supplements his income as a photographer; he also holds an art degree and does sculpting. Then there is his first love, music. Carter describes himself as a professional-grade guitarist who writes songs, has performed live and, until the tremors overwhelmed him, planned to record albums. Moreover, he describes his guitar-playing style as that of a “finger-picker” — heavily reliant on precise movements for his craft.
“The person I am is so wrapped up in activities that I do with my hands,” Carter says. “Where am I without that? This has been like slowly feeling my personality being taken away. To say that it’s frustrating is an understatement. It’s heartbreaking.”
Carter first noticed shakiness in his right hand in the summer of 2006, and his symptoms gradually worsened. “The more finite the movement, and the more precise it has to be, the worse it is for me,” he says.
Medications for essential tremor are often ineffective, and for Carter they also came with undesirable side effects, including moodiness. “My quality of life was not what I wanted,” he says. “All the things I worked so hard at doing — I’m just on the cusp of getting what I want, but I haven’t achieved my dreams yet.” Worst of all was what the symptoms did to Carter’s guitar skills. After putting himself through school playing original music as a singer/songwriter, he had placed his music aspirations on hold to focus on acting. But he’d planned all along to one day record an album, and he continued to play live shows until a year ago, when his handicap became too debilitating.
Carter began discussing deep-brain stimulation with Dr. Pouratian, and as the surgery date approached, he asked if it would be OK to play his guitar during the surgery, so that he could see how his skills were affected by the placement of the electrodes. Dr. Pouratian thought it was a great idea. When he subsequently relayed UCLA Health’s interest in live-tweeting the surgery, Carter had no qualms. “I didn’t think anything of it,” he says. “Honestly, I didn’t think anyone would care to watch this. I had no idea it would become so big.”
Fueled by the popularity of the six-second Vine videos, the #UCLAORLive hashtag appeared on the streams of nearly 1-million Twitter users. Dozens of mainstream news outlets picked up on the story, generating more than 3,200 shares on Facebook, nearly 4,000 tweets and more than 1,700 shares on other social networks and emails. More than 250 blogs posted information about the story.
Dr. Pouratian admits that he misjudged the impact sharing the surgery via social media would have. “I didn’t think it was that big of a deal before we did it, but the response made me realize what an amazing opportunity this was,” he says. “People appreciated being able to come into the operating room, and it gave us a chance to educate them about this surgery.”
Deep-brain-stimulation surgery is most commonly performed as an asleep/awake/asleep procedure: The patient is anesthetized and asleep during the first part, as a hole is being drilled in the skull; once the potentially uncomfortable phase is over and the brain is exposed, the patient is awakened and asked to provide feedback that helps the team precisely position the electrodes, before being put to sleep again as the skull is closed. Since there are no pain receptors within the brain, patients experience no discomfort while awake during the operation.
“This is a surgery whose goal is to improve function and quality of life,” explains Dr. Pouratian. “The best way to ensure that we are achieving that goal is to actually test the patient during surgery, when we first put the electrode in, and make sure we’re getting the benefits from the stimulation while limiting the side effects. If it’s not in the optimal position, that’s our opportunity to move the electrode.”
For essential tremor, that step means working with the patient to test the extent to which the stimulation is suppressing the unwanted movement. Patients are asked to hold their hand straight in front of them, do pointing exercises, draw in spirals, hold a cup and pretend they are drinking — and in Carter’s case, to play the guitar.
Both before the surgery and during the awake phase, after the surgical team had given him the other tests to optimize placement of the electrodes, Carter played original songs on an instrument that had been handmade for him by a friend.
Both songs involved extensive finger picking. After the brain-stimulation portion of the surgery, Carter’s dexterity on the guitar was much improved.
Images of his improved guitar playing were sent throughout the world, but Carter didn’t see an instant turnaround; in fact, as with all deep-brain-stimulation patients, his recovery will be measured in months. Carter returns regularly for programming sessions — a fine-tuning process in which Dr. Pouratian and colleagues adjust how the patient’s brain is stimulated. “It’s a slow ramping process,” says Dr. Pouratian. “This is not a one-time surgery that makes your life better overnight. We’re putting an object in the brain, and it needs time to recover and adjust. It can take two-to-three months of programming until patients see the benefits in a consistent manner.”
But if Carter needs inspiration during his recovery process, there is no shortage of success stories. Richard Rothenberg was only 37 when he was diagnosed with Parkinson’s disease in 2004, and the Century City banking executive’s symptoms quickly progressed to the point that they were having a substantial impact on his quality of life and ability to perform his job. Rothenberg’s neurologist, Jeff Bronstein, MD ’88, PhD ’88 (RES ’92), director of the UCLA Movement Disorders Program, told him he was a good candidate for deep-brain-stimulation surgery, but for several years Rothenberg resisted. “The idea of an open-brain surgery — it was just so major,” Rothenberg explains. “And it also meant admitting that I was aggressively degenerating with my Parkinson’s disease.”
By 2011, Rothenberg found he could no longer deny the impact of his disease. The medication he was taking, levodopa, provided relief for a few hours, but he had to take increasingly higher doses as his body built a tolerance, and too much levodopa in his system brought on the side effect of dyskinesia — the inability to sit still. “I was either very shaky or almost catatonically frozen up,” Rothenberg explains.
Although he was public about his diagnosis at work, whenever he felt his symptoms coming on — the paralyzing stiffness emanating from his head through his body, recurring several times a day as the therapeutic effects of his medication wore off — he would hide in his office.
One day he realized he didn’t want to continue this way. As the symptoms began, Rothenberg called his father — the chairman at the bank — and asked him to sit in his office with him during the downward spiral as Rothenberg waited for his medication to take effect. At the end of the 45-minute period, Rothenberg’s father suggested that his son consider the surgery Dr. Bronstein had been recommending. “I said ‘Yeah, it’s time,’” Rothenberg recalls. “And soon my life turned around.”
Two years after his surgery, Rothenberg says he feels like a new person. He still takes levodopa, and still feels the effects of his disease on a daily basis. But the symptoms come far less frequently, for a much shorter duration, and are significantly less severe. The dyskinesia is completely gone. Rothenberg has returned to working full-time and is able to become a much more active participant in the lives of his teenage children. After the surgery, he remarried, and Rothenberg now has twin girls with his new wife. “I had been unable to drive, unable to work functionally, unable to have relationships,” he says. “I was completely checked out from the aggressiveness of the Parkinson’s disease. Now I have a new life. It’s incredible.”
Carter has similar hopes for his future. “It’s an unbelievable experience,” he says. “I’m not quite sure how I am changed by it quite yet, but I am changed by it.”
For all of the people like Rothenberg and Carter who opt for deep-brain stimulation, there are countless others who could benefit but are either afraid or don’t know about the surgery. Moreover, deep-brain stimulation is being studied for its potential to help in a number of other conditions — including chronic pain, post-traumatic stress disorder, Alzheimer’s disease, obesity and depression.
“This is a technology that’s extremely underutilized,” says Dr. Pouratian. “Just taking into account patients with movement disorders, it has the potential to help many more people if they just knew about it and had the right information. That’s why we wanted to get the word out, through this powerful tool of social media.”