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March 7, 2007

BehindTheMedspeak: Steven Gulie is 'The Terminal Man'

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In one of the most gripping true-life medical narratives I've ever come across, Steven Gulie (above and below), a senior technical writer at Apple with Parkinson's disease, recounted in the latest (March, 2007) issue of Wired magazine what it was like to have electrodes planted deep in his brain through holes in his skull — while he was wide awake.

Gulie's account is a raw, honest and unflinching report about how little us doctors care about you — and why, if you're to get the very best results possible, that apparently inhuman, cold attitude is not an option but, rather, a necessity.

Long story short: If your neurosurgeon is psychologically devastated when a patient dies on the table and then finds her- or himself unable to sleep that night, well, that's all very warm and caring — but what if you're the first case on the schedule the next morning?

Excerpts from Gulie's remarkable piece follow.

    A Shock to the System

    To slow the progress of Parkinson’s disease, doctors planted electrodes deep in my brain. Then they turned on the juice.

    I'm lying in an operating room at the Stanford University hospital, head shaved, waiting for my brain surgery to begin. Sure, I feel anxious, but mostly I feel crowded. There are 10 people milling about, tinkering with instruments and examining me. It’s an impressive crew, including a neurosurgeon and his fellow, a neurologist and her fellow, an anesthesiologist, an experimental physicist, and a graduate student in electrical engineering. That’s right, a physicist and an electrical engineer. Directly behind me, out of my sight, is the star of the show, chief neurosurgeon Jaimie Henderson: 44 years old, tall, erudite, and handsome. On my right, flexing my hands, is neurologist Helen Bronte-Stewart: brisk, smart, and beautiful. In fact, nearly everyone is not only brilliant but also pretty enough to play themselves in the movie version of this story. I call them Team Hubris.

    Team Hubris is installing a deep brain stimulator, essentially a neurological pacemaker, in my head. This involves threading two sets of stiff wires in through my scalp, through my cerebrum — most of my brain — and into my subthalamic nucleus, a target the size of a lima bean, located near the brain stem. Each wire is a little thinner than a small, unfolded paper clip, with four electrodes at one end. The electrodes will eventually deliver small shocks to my STN. How did I get into this mess? Well, I have Parkinson’s disease. If the surgery works, these wires will continually stimulate my brain in an attempt to relieve my symptoms.

    The tremors started in 1999. I remember pouring a glass of wine and my hand starting to shake. “What’s that?” my wife at the time asked. “Parkinson’s,” I joked. We laughed. I was only 43. It seemed funny.

    The shaking went away, but over the next few weeks I started using the computer mouse and eating with my left hand. I didn’t know it, but the Parkinson’s was affecting the fine motor control on my right side. It was subtle, but enough to make me more comfortable as a southpaw. “That’s odd,” I thought. “When did I become left-handed?”

    Parkinson’s causes brain cells in the substantia nigra (Latin for “black stuff”) to die off. This area is where the neurotransmitter dopamine gets manufactured, and without dopamine, the brain’s circuits start misbehaving. When the substantia nigra is 50 to 80 percent gone, you begin to experience Parkinson’s symptoms: usually tremors but also constipation, stiffness, and depression. You slowly lose smooth motion of all kinds, as well as the ability to feel pleasure. It’s a darkness that covers you.

    In 1995, doctors at Mt. Sinai Medical Center in New York conducted the first US surgery to put stimulators directly into the subthalamic nucleus. Henderson started performing the procedure experimentally in 1999, and in 2002 the FDA approved the use of brain stimulators for Parkinson’s. Good health care plans — like the one offered by my employer, Apple — cover the procedure. The cost for mine: about $250,000.

    The heart of the device is a small computer that gets implanted under the collarbone. Electricity flows from this device — the stimulator — through wires running under the skin and the scalp, through the electrodes into the brain, and returns to the computer through the body to close the circuit. The power is always on, so the stimulation is continual. The apparatus is battery- operated, and the battery is not rechargeable. They have to do minor surgery to swap it out every three to five years.

    The surgery normally goes like this: You get one side of your head wired — this takes between three and four hours. Then you wait a week and they do the other side. Wait a week more and get the pacemaker inserted. Wait till the swelling goes down — maybe another couple of weeks — and get it programmed.

    To treat Parkinson’s disease, deep brain stimulation uses a pacemaker the size of a deck of cards implanted under the collarbone to deliver continuous low-voltage shocks down two sets of stiff wires to electrodes near the subthalamic nucleus, a peanut-sized cluster of neurons near the center of the brain. The electrodes can be turned on or off in various combinations to increase or decrease the size of the area being stimulated. The idea is to correct errant impulses that result in the loss of motor control.

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    Things aren’t going as planned. Lying on the table, I’m starting to get very worried. The second electrode still doesn’t sound right.

    Then something wonderful happens. It’s hard to describe, but for more than five years my right hand hasn’t felt the way it should. Suddenly, it’s back. I can tap my fingers, move freely. It’s the miracle cure for Parkinson’s I’ve been reading about! I tell the neurologist.

    The doctors decide to stop the surgery. They staple me shut and cart me down to the CT scanner. This must be a stroke, I think, one of the chief dangers of deep brain stimulator surgery. My last moments will be in this Stanford hospital room, looking at a stain on the ceiling above the GE logo on the scanner.

    But no. After an agonizing 20-minute wait, the anesthesiologist and the nurse return, kindly looks on their faces. Fine. Everything is fine. No bleeding. No problems. It most likely hurt because the local anesthetic wore off, and the surgeon touched the margins of the scalp wound while trying to position the probe. The issues were actually relatively minor, they assure me, and well within the bounds of normal operating procedure.

    Hiccups happen. In this case, the doctors suspect that the brain shifted a millimeter or so. Things weren’t quite where the model said they should be. This can result from either loss of cerebrospinal fluid or simple agitation. It’s why they usually do the two sides of the brain a week apart, with fresh scans each time. They can finish the other side later, they assure me, no problem. Next week, or the week after.

    The second surgery goes about as smoothly as possible. No sooner do I stick out my tongue and tap my fingers a few times, it seems, than it’s done. In record time.

    A month after the second surgery, I’m back at Stanford to program the stimulator. Getting the settings right is midway between an art and a science. On each side of the brain is a probe with four electrodes. The team needs to decide which electrodes to activate with how much voltage. The device is capable of delivering 10.5 volts, but at that power there’s danger of damaging the brain tissue. So we start at 2 volts and won’t go over 3.5.

    Today, eight years since the first signs of Parkinson’s and after months of fiddling, my body is almost free of symptoms. With the stimulator turned off, a Parkinson’s test shows 20 significant impairments. With the stimulator on, it drops to two. Add just a touch of L-dopa and it drops to zero.

    The last wisps of fog have cleared away. My jokes make people laugh again. I can keep up with conversation. I can ride a bike. I can write. It’s been five months since the surgery, but it has finally all come together: It works. I forget that I even have Parkinson’s most of the time. And last November, I went back to work full-time. It’s a miracle. A second chance at life.

    I know it’s not a cure. Parkinson’s is degenerative. Those neurons in the brain keep dying, producing less and less dopamine. How long will I feel normal? No one knows. A long-term study completed in 2004 showed that four years after surgery, patients still typically required 50 percent less L-dopa than they did before.

    After that, we’ll see. The surgery has had FDA approval only since 2002. The long-term effects are simply unknown — I’m the guinea pig. The trick now is to make the most of the time I’ve been given.

....................

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On the Wired website Gulie narrates a montage of images and video about his procedure.

March 7, 2007 at 04:01 PM | Permalink


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Comments

im supposed to do a book report for this. do you think that you can help me a little because i really dont understand the book at all....

Posted by: jessi | Nov 13, 2008 9:16:11 PM

I am very impressed by this narrative.

However, I landed here after trying in vain to find a way to get in contact with Steve Gulie for a question on QTVR, multimedia CDROMs and the instrument autorotate5Sec.mov that he provides on http://homepage.mac.com/qt4web/sprites/items.html.

I hope he will make contact.

Robert Cailliau

Posted by: Robert Cailliau | Mar 10, 2007 5:20:54 PM

I wrote the article, and I certainly don't see it as an endorsement of uncaring technicians as doctors. Don't get me wrong, I love "House" and enjoy a good misanthropic curmudgeon, but I think compassion is an essential quality in a really good physician. Compassion without skill is not enough; that's a friend, who cares but can't help. Skill alone is not enough; a technician can help, but if he/she doesn't care about you, you have to hope your case is "intereesting" enough to capture the technician's full attention. A doctor who cares about you as a person has the motivation to engage their technical passion on your behalf. I admire Dr Jaimie Henderson for his skill, but also for his warmth, wit, and compassion. He followed up and made important suggestions that helped tremendously, after the surgery was over and his "job" was done. I don't think he lost any sleep over it, but he gave it time and attention, above and beyond the call of duty, because he cared. I count him as both my physician and my friend. In a perefect world, that's how it works.

Posted by: Steve Gulie | Mar 8, 2007 12:02:20 PM

Hunh. I read the whole thing and didn't pick up any great emphasis on the doctors being cold, heartless, uncaring bastards. It just seemed to me like they were doing a job. Most regular old working people don't give too much of a shit about the strangers they're doing a job for, either. 'Course, most regular old working people don't have the opportunity to kill their customers or mace 'em up for life.

I figure all a doctor owes me is a good job. (If he/she is outright rude, I'll be outright rude right back. I can always go someplace else.)

I remember a line from Jonathan Miller's "The Body In Question" about a woman who had a heart valve replacement -- "By treating her like a mechanism, they restored her humanity."

Posted by: Flautist | Mar 7, 2007 11:50:12 PM

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