It’s an idea as simple in conception as it is revolutionary: implanting electrodes in a person’s brain to send the malfunctioning circuits back into normalcy. Unlike the surgeries of past decades, much of deep brain stimulation (DBS) is reversible—flip a switch and the interference stops.
The technique has shown promise for treating ills from Parkinson’s disease and dystonia, for which it has received approval from the Food and Drug Administration, to depression and brain injury. In a little more than two decades, more than 40,000 people have received the treatment, often with remarkable results.
Veteran health writer Jamie Talan explores the history and the science, the perils and the promise, behind the technique in her new Dana Press book, Deep Brain Stimulation. Talan, science-writer-in-residence at the Feinstein Institute for Medical Research, also co-authored the 1998 book The Death of the Innocents with Richard Firstman. In this interview with Dana Press journalist Aalok Mehta, she explains why DBS is so intriguing—and why it’s never an easy decision.
|Jamie Talan |
AM: How did you become interested in the topic of deep brain stimulation?
JT: I have been obsessed with the brain for about 30 years. I started my career at Newsday in my early 20s and I stayed there for 25 years, until last year, and I covered the brain. I continue to this day to write about new research. I’m always looking at the brain for what it can tell us about being human and about the makings of who we are and why we do the things we do.
I became interested in deep brain stimulation because one of our scientists here (at the Feinstein Institute), David Eidelberg, has focused a lot on brain scans in Parkinson’s patients and Huntington’s patients, and we were talking one day about the advances in technologies and about deep brain stimulation and at that moment I was intrigued.
My idea was to create a consumer book where we would show the evolution of deep brain stimulation from the basic history of neurosurgery and how scientists in the 1950s and ’60s and ’70s started thinking about using brain surgery to cure a host of diseases. They didn’t have the brain scans we do today, they didn’t have any of the technology; they were the pioneers of their day.
I found the whole process very intriguing. I found patients for every single disease state that DBS is being used for and talked to them about what brought them to have it, what their histories were. I got to meet some incredibly sick people who have had some incredible challenges in their life and who have found some measure of relief from this very intriguing technology. I think it’s going to be such a powerful tool for patients who have no relief from standard treatments, which as we know happens all the time.
Many people have placed an incredible amount of hope on this technology, even though it’s pretty early in its development. How did you work to make sure the book remained accurate despite that?
[In depression], you can’t even get into these studies without having been on at least a dozen medicines and electroshock therapy. Nothing has worked for these people. They come to this as their last resort; they’re entering with all of the caveats of any experimental trial—it may not work, it may not work at all and, especially, it may not work for you. They’re coming in with all of this anticipation, this hope, and it’s a long road, and the scientists know this. They’re caught also in this dilemma of how much do we promise; can we promise anything?
Deep brain stimulation is now being tested for its benefit in minimally conscious states, people who have suffered traumatic brain injuries. The thinking is that maybe we can awaken areas of the brain that are not connected or are connected but asleep. There was a study out of New York, with Nicholas Schiff at Cornell and his colleagues, where they identified a candidate who could be the first test subject. And it worked.
Here was somebody who had very minimal consciousness for years, and for all intents and purposes he was living his life out in a nursing home. And once they did the deep brain stimulation, he was able to talk to his family. It’s pretty amazing, because there are probably hundreds of thousands of people living in the back of nursing homes and nobody ever thinks there is anything that could wake them up. And this offers potential to do just that. Now the question becomes, OK, if we awaken people, even just a little bit, who’s going to pay for it and how do we find the best people who would benefit from it?
Deep brain stimulation is a pretty arduous process. It doesn’t always work and it has ignited its share of controversy. Did you encounter any resistance on the topic while researching your book?
There was a lot of controversy about the initial brain surgery that was being done back in the 1950s, ’60s and ’70s, with this doctor whom you’ll meet in the book, Irving S. Cooper, who basically went in there and experimented on patients with dystonia and Parkinson’s and allegedly only talked about the good. He sold this surgery as the answer to the problems for many people. [But] there were many, many people who didn’t benefit from this surgery and some people who were actually harmed by it. It never came out at the time, but a lot of his colleagues were adamant that you can’t go in there and do these kinds of things without proof that they work.
You could make the same arguments today. Here we are, going into the brains—and not lightly, I mean, the science has really built up this ability to do what they’re doing now, but we still don’t know. Melissa, who I wrote about in the book, is nowhere near 100 percent cured by this. I spoke to her about six months ago, and she still wasn’t working. She was much better, but she was still a work in progress.
We have this high expectation, but it’s not a cure. It’s symptomatic relief, and if people come in there looking for a cure, they’re going to be disappointed.
In your book, you mention a colorful and varied group of scientists, like Coop the King, Mahlon DeLong and (Nicholas) “Niko” Schiff. Did anyone stand out to you?
Well, I just love Niko and Niko’s work. He was so brave in taking this technique and looking at it for the treatment of a condition that no one was touching. With traumatic brain injury, once your brain is asleep, there were few people who went there and said maybe there’s something we can do about it. There’s this growing movement, a small group of scientists who are really asking questions [about] the human brain during unconsciousness or during minimal wakefulness, about what’s going on in there.
Niko Schiff showed up, and he’s now got studies under way with federal approval to do it in 12 patients in minimally conscious states. But then [there are] the ethical questions: Is it worth it to wake someone up so they could talk to their loved one and maybe feed themselves, but maybe not ever leave their hospital bed?
It’s really a big question now, who’s ultimately going to benefit from the work of Niko Schiff and his colleagues. But it is pretty awesome. I enjoy listening to the stories of scientists, like how they came to do what they did. Niko started off as a college student going off to Canada to peek into the archives of Wilder Penfield, and just got hooked with the studies he had done on the brain in its abnormal states.
You spent nearly a quarter-century as a newspaper health reporter, but now you work at a medical research institute. Has being surrounded by scientists instead of reporters influenced the writing of this book?
My job has always been to be surrounded by scientists. And now that I work sort of hand-in-hand with scientists—I spend a lot of time in the lab, and I’m actually doing some research myself now—I think it’s really informed me to ask different questions about what’s going on, and more of the back story. For a newspaper, people really want to know what the story is today, what the issue is today. We never come back on stories once we write about a major finding, we never go back and say, well, did this hold up? This book allowed me to look at that, ask those questions and see whether the science was holding up 15 years down the road.
What do you hope people take away from this book?
Anybody who is not having successful treatments with the standard fare and who’s considering deep brain stimulation should buy the book or read the book and really ask themselves, “Would I be willing to take the risk of having brain surgery and putting this device in my chest wall, this battery device?”
It’s a commitment. It could take months or years to get it right, and so I think no one should go into this without knowing it’s a long-term commitment and it might not work.
If I can help people who are on the road to making this decision, if I can help them in any way by telling the story of the history of deep brain stimulation, then I feel my day is complete, I’ve done my job.