Wired for Hope
Tuesday, June 27, 2006
I am by nature impulsive. I was in the Virgin Islands on vacation with my daughter when I decided to have brain surgery. Being in such a heavenly place made me both optimistic about what life could be and intolerant of how Parkinson's disease was slowly eliminating my ability to enjoy it.
When I returned home, I called my neurologist and told her I wanted to have deep brain stimulation, or DBS.
DBS involves the implantation of electrodes into very specific areas of the brain. When connected to a power unit and to controllers implanted in the chest, the electrodes deliver signals that interfere with the Parkinson's-induced signals from the brain, reducing or at least temporarily eliminating the quaking, quivering, rigidity and slowness that characterize the disease. The device can be set in so many permutations that it takes weeks or months to program it correctly. Set the voltages too high, and your hands or feet feel electrified; too low, and you need to supplement them with more medication. "Just right" is supposed to feel pretty good.
The benefit of the procedure lies in its ability to intervene electrically rather than chemically. As Parkinson's advances, the medication one needs increases to the point where the patient faces an unwelcome choice: Either take enough and deal with the shaking and gyrating movements the medication causes, or reduce the dosage and allow the Parkinson's symptoms, which can be similar to those side effects of the drugs, to take over your body. As time passes, your body veers between being difficult to move and moving uncontrollably, with less and less time in the comfort zone between.
DBS changes the dynamic. It does not totally replace medication, but it greatly reduces the need for it. In my case, at its best, DBS has allowed me to function while taking only about a quarter of my previous medication. That enabled me to reduce the chemicals in my blood, permitting me to avoid my transformation into a stump without triggering bouts of shaking. As life with Parkinson's goes, this is not so bad.
Prior to the surgery, the level of drugs in my blood would build up during the day so that by evening, I would nearly writhe out of my chair. That was bad at home; in public, it was a disaster. My courage was wilting under the stares of strangers and, worse, the sympathetic looks of horror from friends. Like many others with advanced Parkinson's, I was at risk of transforming my home into a prison, a place I could leave but seldom if ever did.
We're Going In
DBS changed all that, though not overnight and not easily. My surgery was excruciatingly painful. It is true that there are no nerve endings in the brain, as the maker of DBS implants likes to tell prospective users. One has to reach the brain first, however, and that means drilling through the skull.
There is about a 1-in-20 chance of things going very wrong during the surgery. I didn't worry. I did not believe my luck would be so bad as to draw the single short straw among 19 long ones. What did preoccupy my thoughts before surgery was the prospect of staying awake during the entire four- to six-hour procedure.
DBS is done in two stages, generally spaced five to seven days apart. On the first day of surgery, they implant the electrodes in the brain. On the second, they insert the battery and control units in your chest, and the wires just beneath the skin, connecting the stuff in your brain to the stuff in your chest. Generally, you are in the hospital only one night, after the first day of surgery.
On the day of my first surgery, I was told to arrive at the hospital at 4 in the morning. I did so, and spent most of the next seven hours getting checked in (total elapsed time: six minutes) and waiting (6 hours 54 minutes). They eventually called me to go through a door and enter the world of pre-operative care.
I soon learned that they now ask you to put on two hospital gowns, one facing in each direction. But because I had been instructed not to take my Parkinson's medications the day of surgery, I was shaky and got so tangled that I emerged from a dressing room in disarray and unintentionally put on a show. That's okay; worse things were to come.
When my neurosurgeon arrived, things started to happen. He had wanted an MRI of my brain, but that had not been done. And apparently there was a shortage that day of the people who move patients from place to place. The surgeon was impatient, and the next thing I knew, the director of the MRI facility, a likable young man who told me to call him "MRI Mark," was wheeling me to the MRI room, explaining as he misjudged a turn and clipped a wall hard that this was not something he normally did.
Before the MRI could be taken, a metal cage called a halo needed to be attached to my head. It looks like a prop from a bad science-fiction movie. It is used to immobilize the head and to assist in the location of the precise targets for the drill. As the neurosurgeon twisted the first of four screws into my head to secure the halo, I grimaced. The local anesthetic was not yet effective. I let him know this, and he promised to give me more painkiller "in a minute," just as soon as he finished what he was doing.
As he moved on to the second screw, I remember thinking that giving me more painkiller after he finished was a little like closing the barn door after killing all the animals inside. He screwed the remaining screws in halfway, and then went back to each screw and screwed it in until it was tight.
I was dazed and thought the pain was a necessary rite of passage, a sort of Parkinson's hazing ritual. It was only later that I learned from other brain surgery veterans that the pain was entirely avoidable. One simply needed to wait briefly for the anesthetic to take effect.
I began thinking of the neurosurgeon as "Dr. Evil." I recognize this may be unfair to him. I doubt he's really evil. More like indifferent to patient pain. But "Dr. Indifference" just sounds weird.
Being conscious during surgery reveals a whole different realm of experience. I was able to overhear arguments between my neurologist and Dr. E. on the critical issue of electrode placement. I was able to hear one of the physician's assistants adding numbers to determine drilling coordinates and making error after error -- each of which the surgeon fortunately caught and corrected. While waiting to go into the OR, I observed another medical team wake a patient from anesthesia just enough to hold a pen and sign a consent form. I overheard an anesthesiologist, unhappy to learn that a patient was allergic to a particular drug, call the pharmacy, listen to the possible adverse reactions, and respond, "Well, let's just try it and see how it goes."
A Lighter Day
Despite the unnecessary pain I experienced, this surgery changed my life. True, there have been plenty of annoying back-and-forths with my neurologist to tweak the settings. But the sweet spot that lies between too much juice and too little is sweet indeed.
Just knowing I have a device in my head that can control Parkinson's symptoms has given me hope and patience. I have found myself thinking about having fun again. My mood has started to lighten.
More people need to know about this surgery. Despite its flaws, it is better than any alternatives I've encountered, and I've exhausted all approved medications and have participated in two clinical trails of new drugs.
My endorsement of DBS is not unqualified. There are some things the surgery makes better (movement); others it makes worse (balance and speech). For most patients, the things it makes better are more significant than those it makes worse, but anyone considering it should be aware of all the consequences.
Finally, the implanted apparatus itself could be improved. It runs on batteries that need to be replaced every few years, and the power units are large enough to be plainly visible if you are not wearing a shirt. I want the good people at Medtronics, the maker of the device, to know that I am not being critical. But I've had plenty of time to think, and there seem to be some pretty obvious improvements that could be made.
For instance, Rolex makes watches that generate electricity from body movements. Why not apply that to a DBS unit? I figure one good episode of dyskinesia could keep my unit going for a month.
Or take the iPod Nano, which packs a lot more features into a much smaller package than the unit in my chest. Maybe Medtronics should simply license the technology. And not just for the size advantage: The DBS wiring under the skin goes from the chest and wraps around the ear on its way to the brain. Perfect! Implant the iPod's headphone cord at the same time, and just drop it off at the ear.
Of course, there is also wireless technology. If my home computer network can produce a signal strong enough for some hacker at the curb to steal my Social Security number, why can't a DBS unit toss a signal from my clavicle to my brain?
If the scientists at Medtronics learn to think outside the head, they may come up with something so nifty that even those without Parkinson's will want it.
Anyway, so I have this unit implanted in my chest and wires stuck in my brain, and it's adjusted more or less well, and for now life is better. I take less medication and am subject to fewer spasms and shakes.
I figure one can either worry about the future or enjoy what the present has to offer. I confess I sometimes allow worries to get the better of me. But trying to have fun with the things we must deal with is so much more satisfying that I invariably return to this approach.
It's not because I'm brave. It's because I am alive, damn it, and that is a whole lot more than you can say about people who are not. After all, who would have guessed five years ago that I would have brain surgery and a few weeks later buy a tennis racket? But I did.
I just hope the 10-year layoff has helped my game. ?
Daniel Stark, a New Jersey writer, has chronicled his battles with Parkinson's in previous issues of the Health section. Comments:firstname.lastname@example.org.