I am not a techno-futurist. I had no hankering to make myself a robot. But you’ve gotta understand: I was in agony and I was sick of it. (Video/photo illustrations and graphics: The Globe and Mail. Medical image illustrations are not to scale and are not meant to be exact representations.)

Anna Mehler Paperny is the author of Hello I Want to Die Please Fix Me: Depression in the First Person.


Your brain feels no pain, so I am unable to tell you in any satisfying way about the exact moment the first electrode was implanted, eight contacts nestling in my subgenual anterior cingulate cortex.

I can tell you about the drilling that preceded it: intense pressure in the top of my skull and a sensation of having a helicopter perched on my head. Jud-jud-jud-jud-jud.

I was awake but profoundly high, thanks to a potent and effective cocktail of dexmedetomidine, ketamine and fentanyl. “We’d give you umbrellas and olives,” the anesthesiologist said, “but they get caught in the IV.” I couldn’t even feel anything when they momentarily switched on the stimulation, although I desperately wanted to. “How about now?” the neurosurgeon asked me. “How about now?” I told them I felt a bit more alert, which was true, but may also have been because I was straining to focus through a sedative haze.

The twin electrodes and their contacts were placed, about two centimetres apart at the tips, by a machine built for precision into the exact location in my brain believed to be a key focal point for depression.

Over the past 14 years, I’ve often fantasized about some scan revealing, finally, the locus of my mood disorder – the neural source of all my angst. There, lurking in the corner: It’s the depression! And now, at long last, we were as close as we’d likely ever get. Two electrodes, 16 contacts implanted in a fold of brain believed to be both reduced in size and elevated in activity in people with one of the world’s leading causes of disability.

Here, on an operating table surrounded by gowned clinicians, in one of the world’s premier centres for deep brain stimulation, we were. One of the neurosurgeons read aloud co-ordinates handwritten on a white piece of paper taped to a clear plastic sheet draped over me like a tent.

Here we were.


Of course, it’s not that simple: There are numerous parts of the brain implicated in emotions, in mood, in behaviour, in all the emotions and moods and behaviours involved in a mood disorder both common and commonly resistant to our best attempts at treatment. But this was one part. This was the part I was betting on, in two surgeries, a week in hospital and months of tinkering with electrical stimulation, to make me, finally, well.

The premise of deep brain stimulation (DBS) for depression is both ingenious and deceptively simple: Your brain activity is a series of electrical impulses. As you read this, signals zip between neurons facilitating the transmission of information. So depression, too, that brain-dwelling menace, must exist in an electrical context. Something is misfiring.

Treating mental illness with electricity is not new. Electro-convulsive therapy, which seeks to shock the brain into submission – and remains among our most effective options, if an especially scary and potentially damaging one – has existed for close to a century. Deep brain stimulation has been used for Parkinson’s for decades. But its use for depression is still unusual. Still experimental.

A few hundred people, maybe 1,000 globally, as far as we know, have gotten it. Ontario has not yet committed to covering the costs of DBS equipment for depression. My procedure, part of a research study at Toronto’s Sunnybrook Health Sciences Centre, was paid for philanthropically.

It’s believed to be involved in emotional regulation and scans have shown it to be both smaller and abnormally hyperactive in people with depression. (This sounded contradictory until Sunnybrook neurosurgeon Benjamin Davidson explained to me that your brain is not, in fact, like a muscle, and a region can be both atrophied and hyperactive.)

“You introduce stimulation and, sort of, it jams the circuit,” said Nir Lipsman, neurosurgeon and director of the Harquail Centre for Neuromodulation at Sunnybrook. “It’s called an informational lesion. There’s so much electricity there that it almost acts like a lesion,” and suddenly a once-hyperactive area isn’t firing any more, he explained. That has cascading effects on other brain regions.

“You definitely see effects further downstream, in other parts of the brain,” Dr. Lipsman said. “This is a network-wide intervention. So that’s what I find, arguably, one of the most fascinating things about DBS. And that’s really what got me interested in the whole field in the first place.”

(Full disclosure: Both Dr. Lipsman and Dr. Davidson were involved in my care. In addition to letting me interview them, they were unspeakably kind to me as a patient.)

I was astonished, when I first looked at illustrations, how deep in the brain this misfiring region is. How do you snake wires that far down? How do you do so without piercing anything important? The answer: Very carefully, with great precision, and a little luck.

They do go through your brain but there are no major veins or arteries on that route, Dr. Davidson told me. The 14-millimetre hole neurosurgeons have drilled in your skull allows them to check visually and avoid any blood vessels.

But what about damaging the brain matter I desperately need to try to function? Hundreds of thousands of people have undergone this procedure for movement disorders, Dr. Davidson said, and none have reported cognitive impairments as a result.

“There’s a lot of redundancy in the brain. So even if we are interrupting a few fibres, which we must be ... we’re probably interrupting an incredibly small fraction of fibres that are passing through the brain.” (I still wonder what they were doing, these fibres we’ve interrupted. Would I notice a few missing tendrils? Not so far.)

The science on deep brain stimulation for depression is by no means settled. A pair of major placebo-controlled trials were halted in the U.S. when they found no difference between the intervention and a sham. But clinicians contend the procedure has promise. I was told half of the 18 people who preceded me in this open-label study responded to the treatment.

“Those of us who are practitioners in the field, we know that in many patients, when we do this, it works,” Dr. Lipsman said. “It’s a life-changing procedure that, in the right selected patients, done at centres that have experience, is able to get patients out of the cycle of depression.”

I desperately hoped to be one of those patients.


You’ll wonder what drove me to put my name forward to have holes bored in my skull, why I signed up for permanently implanted brain hardware and Bluetooth-mediated zapping. What made me jump through clinical hoops – a referral, two psychiatric consults, a neurosurgeon consult, seven hours of tests in hospital over two days – to undergo two major surgeries and numerous follow-ups for an experimental procedure as likely not to work as to work.

I am not a techno-futurist. I had no hankering to make myself a robot. The idea that this contraption could be hacked (hacked!) made me want to run in the other direction. (This is a real concern: In the literature it’s called “brain-jacking,” Dr. Davidson told me. The device’s software is designed to prevent it.)

But you’ve gotta understand: I was in agony and I was sick of it.

Sick of waking and wishing for death. Sick of drowning in paralytic self-doubt. Sick of endless murk. Sick of suicidality that struck both predictably and unexpectedly – as darting mosquitos, as a flattening subway, as a subsuming swamp. Enough, already. After 14-plus years, enough.

The first surgery went well, and then I spent five days in hospital with electrodes sticking out of the right side of my head.

For some reason I had expected the electrodes to be shiny and metallic – copper wires in my brain. But they were a platinum-iridium alloy, encased in a polyurethane sheath for insulation, making them look like slim Apple charger cords wound loosely around the folds of a foam-green towel-turban shielding my stapled scalp incision and, later, coiled at the side of my head.

I learned to manage the pain in my head and chest by dosing it early – if your instinct is to make that pain pill last longer by waiting ’til you throb, I learned the hard way, you’re waiting too long.

I became intimately familiar with the sense of antibiotic medication snaking liquidly into my veins. I grew to miss, for a few weeks, running, stretching, lifting bags of groceries and heavy plates, scrubbing or using soap dispensers with my right hand. Raising my eyebrows. Breathing deeply.

I healed well but not without complications: During a routine checkup months after the procedures, I piped up after completing several mood-checking scales: “Um, this is probably nothing. But there’s something sticking out of my head.” They called the neurosurgeon over and he quickly diagnosed the problem: my dear implanted electrodes, poking out of my scalp like querulous creatures, pushed by a slow-moving invading infection.

When someone says you need emergency surgery, you picture yourself wheeled hurriedly by clinicians into an operating room accompanied by medical beeps. It took 19 hours in the emerg and four hours on the ward before I got into an OR. The surgery itself was a breeze and once again I must commend the compassion of everyone I dealt with, including ER nurses run ragged. Everyone deserves such care.

(I am told this is a very rare complication. But I do recommend, when something foreign pokes out of your head, to get it checked out.)


Dr. Lipsman figures far more people with depression could benefit from deep brain stimulation than are accessing the procedure. “We’re talking about thousands of patients in Ontario alone that ought to at least be evaluated or assessed.”

If deep brain stimulation is effective at treating treatment-resistant depression, people with treatment-resistant depression should have access to it. And to answer that all-important “if,” we need to invest in research. Crucially, we need to examine not only the procedure itself but how to select people who could benefit from it and how to measure outcomes once they’ve gotten it – angles that have so far been less examined, Dr. Lipsman said.

But surely there are people who are being failed by existing depression treatments who may not need or want brain surgery, but nonetheless deserve better than this.

About 5 per cent of the adult population has depression and about 30 per cent of them won’t respond to existing treatments. That’s millions of people failed by the best we’ve got who continue to endure debilitation. And so few get the best we’ve got. I couldn’t stop thinking, as I went through a battery of assessments, scans and follow-ups, how unfair it is that I got so much care when so few people with severe mental illness do (and for so many, their care comes only at the pointiest, most emergent, most coercive end of the system).

Not everyone wants or needs holes in their head; everyone deserves compassion. The first step has to be getting everyone who needs it evidence-based, accessible, equitable, preventive, predominantly voluntary care. But for people still suffering, the question becomes: What’s next?

You can’t really scale this intervention to address the millions of people with depression whose disorder resists all other treatments. It’s expensive, labour-intensive and comes with risks of infection and bleeding, not to mention time off work. Clinicians need people who can stick around for months or years of follow-up.

But maybe, just maybe, we can use findings from wired brains like mine to develop something better than what’s already out there.

This is an embarrassment of riches: Researchers still, by and large, do not know what they mean. But they are working on interpreting them. The strength of years of data for Parkinson’s patients recently prompted the U.S. Food and Drug Administration to approve a type of DBS for Parkinson’s that switches on and off based on brain activity, Dr. Davidson told me.

Multiple times, while I was in hospital between surgery one – the skull-drilling, electrode-implanting adventure – and surgery two – the worming of electrodes from my brain under the skin of my neck to a pacemaker implanted under my clavicle – Dr. Davidson and his team of researchers plugged the loose ends of my electrodes into a machine that translated my brain activity into tracings on a screen as I ranked my mood or just sat meditatively. My “externalized” electrodes provided a rare opportunity to get a high-definition look at brain waves in real time.

At intervals following my surgeries, with the electrodes connected to an implanted pulse generator whirring away under my collarbone, every time I experienced one of four strong mood states – sad, anxious, on medication and neutral/happy – I entered it in a special handset. Clinicians periodically download records of my brain activity during each of these mood “events,” along with snapshots of brain waves taken every 10 minutes.

This, Dr. Davidson said, could not only give us new insight into what a depressed brain looks like and how it acts, potentially finessing future deep brain stimulation, but could revolutionize diagnosis of what for decades has been a largely catch-all disorder – it could “help disentangle some of that heterogeneity that currently muddies the waters in psychiatric research and, hopefully, in psychiatric care.”

If my wired brain acts differently than someone who (for example) has a less anxious flavour of depression, maybe these are different subtypes of what was once classified unhelpfully as the same disorder. Maybe we can marry my more invasively gathered data to a comparatively less invasive EEG (although, let’s be real, getting all that gunk out of your hair is no picnic) to more precisely diagnose someone off the bat. Maybe we could use this information to finally provide reliable biomarkers of who will respond to what intervention. Maybe clinicians could use it to contextualize a change in mood – is this an alarming descent, or a fluctuation?

This futuristic eavesdropping may be yielding results: Dr. Davidson’s team noticed a spike in gamma and beta waves every time I took ketamine (yes, I am still taking ketamine). He drew me a rough sketch of the serial surges in frequency – a craggy Utahn landscape. What does this mean? We’re not sure yet. Gamma waves have been associated with movement in people with Parkinson’s, Dr. Davidson told me, but we don’t know what it does in patients without the disorder.

“When you’re eavesdropping on neurons, there’s a lot of noise,” Dr. Davidson said. “There’s a lot of, ‘What do we do with this? Is that real? And should we make a big deal of this little spike we see, or is it just an artifact?’ It’s hard to know. But we’re seeing a very clean, strong, and robust signal.”

“The thought is that ketamine helps a lot of patients with depression,” he continued. “And the way it does is not fully understood. And this could shed some light on, a), how ketamine works, but, b), perhaps, how depression works.”

The finding prompted an evening hospital excursion as five of us clustered in an exam room while I snorted my medication (apologies to all who had to witness that), answered questions about my moods as I dissociated and as they recorded my brain activity. I watched as two neurosurgeons and two electrophysiologists tried to figure out how to download the .json file of brainwaves onto a laptop – a very relatable experience.

The in-person session provided a continuous reading of what my brain was doing in response to ketamine instead of seeing the snapshot my at-home device provided, Dr. Davidson told me later. He compared it to watching a sunset rather than just seeing a moment of it. It allowed them to see the heightened beta/gamma activity as craggy bursts rather than getting the perception, from a moment-in-time picture, that this was a sustained heightened state.

Two surgeries, a hospital stay and a multitude of tests later, I have no idea whether deep brain stimulation will work for me. We switched the contraption on in early May. As you read this I am getting 7 milliamps of electricity from two electrodes delivered to that critical fold of brain.

I hope it works. But more importantly, I hope the data being recorded from my brain activity will help people who badly need better options.

I hope the very need for skull-drilling electrode insertions will remind us how desperately those better options are required.

We owe suffering brains that much.



Credits

Story by Anna Mehler Paperny Digital storytelling by Laura Blenkinsop Video and animation by Timothy Moore Medical device illustration by John Sopinski Art direction by Bryan Gee Editing by Mark Medley

Photo/video illustration sources: The Globe and Mail and Getty Images. Brain scan imagery courtesy Anna Mehler Paperny.