04 Apr The Bionic Woman
Time to emerge from the closet. In July of 2020, I had a little thing called brain surgery.
When I described it to friends afterward, they all said “Oh my god have you written about this? You must!” But, well, you know, there are times when you need to recover and get your bearings and go on with life, and after all it’s not as though things weren’t happening out there in the world that needed addressing. Climate change. A pandemic. Sexism and racism and stuff. Of late, war. In any event, I’m writing about it now.
As some of you may remember from previous blogposts, I’ve mentioned that about 12 years ago I was diagnosed with Parkinson’s disease. I’ve been very fortunate, in that I have beloved, incredibly supportive family and friends; plus I tolerated the meds well, and during the intervening decade, the increase of this progressive disease was so subtle as to be barely noticed. Yes, I exercised, ate properly, and got sufficient rest, or at least as much rest as a feminist activist can manage. I also was highly privileged: a literate European American, who had generally fine medical care–and medical insurance.
But by 2020, I had begun to feel the effects of PD: increasing tremors, intensifying balance problems, and worst of all, dyskinesia and dystonia as side effects in response to the medication, levodopa carbidopa. These side effects can make you flail about or can cramp and freeze certain muscles very uncomfortably. My superb neurologist, a movement-disorder specialist, had exhausted her creative cauldron of medical cocktails–a little more of that, a bit less of this–so that left either settling for the situation as it was, or looking into DBS.
DBS are initials short for deep brain stimulation. I know that that sounds like something we all could use, since who, after all, wants to work with a shallow brain? Actually, of course, it entails much more. It’s like a pacemaker for the brain, not the heart. So the literate part of me got to work and researched this to a fare-thee-well. The research went both ways, because surgery necessitated my being thoroughly tested for physical as well as cognitive health, since cognition is affected in some Parkinson’s patients. Well, I passed. We can skip over most of the details–you don’t really care about how we planned to access the brain site deep into the sub-thalamus, do you?–so we can move right to the part about finding a wondrous surgeon. He had done about 20,000 such procedures before, so that was reassuring—but the best part was hearing that I would be awake for the main operation. Loving science as I do, I was absolutely thrilled, although friends expressed themselves with vocal Eeeeew’s. Fortunately, it’s even necessary to be awake. The brain itself has no pain receptors, so once they numb the skull with a pin prick of anesthesia you don’t feel anything. Moreover, they need you to be awake because when they’re inside there, they ask you to wiggle your fingers, name the days of the week, count backwards, and other evidence of cognition, to be sure they’re in the right place.
There actually are two operations. The first requires a full medical work-up, a stress test, and a brain MRI. This is the op you’re awake for. You’re in the hospital only overnight – which I find astonishing. So in you go, do the pre-surgery stuff, get thoroughly briefed and have all your questions answered not only by the surgeon but also by an efficient, pleasant young woman who is his nurse practitioner (and who has adorably read some of your books), then have your head secured inside a kind of metal cage so that it becomes immobile, and finally off you go into surgery. There, they bolt your cage to the operating table to ensure there is no movement. None of this is uncomfortable. You’re hooked up to various machines that monitor everything from breathing to heart rate to blood pressure to oxygen level, you name it. It’s quite cold in the OR — I gather for the sake of the great machines that are everywhere, including those for micro surgery — so they thoughtfully supply pre-warmed blankets and you snuggle down cozily. They did not need to shave my head, only a small patch where the incision would be. There were quite a few people in the OR, I’d say about eight: anesthesiologist, pulmonologist, neurologist, cardiologist, etc. And then there was me. The room was quiet — this surgeon does not like music — and attentive. I felt I was in good hands.
Once you’ve been through the preamble, the surgeon calls around the room and checks that everybody’s ready, and one by one they all respond. Me too. Then there’s a pin prick on your scalp and you don’t feel a thing after that. But you sure as hell hear something! You hear the sound of a hole in your skull being delicately sawed open. Well, you think, that’s interesting. The sound gets louder and then louder still. Although you’ve been pre-briefed about this, it nonetheless reminds you of an onrushing subway train inside your head, and is decidedly impressive. Then, all at once, it stops. After a moment or two, the surgeon says “I’m in, that’s it. I can see your brain, Robin.”
“Wow.” I hear myself say, somewhat idiotically. Wow? This is the best I can manage?
Then there’s a minute or two, perhaps longer, where the giant machines and micro-surgery cameras are maneuvered into place.
“You alright there, Robin?” the surgeon asks solicitously. “Oh yes,” I respond blithely, “I’m fine, just fine.” So far, brain surgery is making me banal. Then again, I’m not there to be witty. The truth is that I am absolutely jaw-agape (if I could move my head) with awe.
The surgeon checks the entire room again and everyone responds with different versions of “ready.” Then he says “OK, I’m going in,” and starts counting. One. A pause of about six seconds. Two. Another pause of about six seconds. Three. And so forth on down until he reaches 15. “That’s a hit,” he says, “I think we’re right on target.” Then he begins the ritual tests to check placement of the tiny electrode leads. “Robin, move your right hand and wiggle your fingers. Good. Now your left hand. Good. Now touch the thumb and the third finger of your right hand.” And so forth. Days of the week and counting backward follow, and everything comes out OK.
This is breathtaking. In fact, it turns out that I am literally holding my breath because first the anesthesiologist and then the entire room choruses loudly, “Breathe, Robin, Breathe!”
And so I do. Gladly. Then I cannot resist saying to the surgeon, “Michael, forgive my language but I have to tell you: this is freaking amazing.” (Except that I said a different word, not freaking.) He laughs. Then he commences the exit route, having implanted the leads — the wires that conduct the electrical impulses. “15,” he goes and that familiar pause. Then 14. Pause, then 13, and so on until he says, “I’m out.” There is a sigh of collective relief, but it’s not a nervous sigh. It’s an exhalation of confident accomplishment on the part of everyone in the room.
And then he says, “OK everybody, ready for the other side?” And the entire procedure happens all over again, because this was a same-day bilateral procedure. At the end of that, he closed the wound, snarling at his assisting surgeon in that wonderfully haughty, arrogant surgeon manner, “I’ll close. I’m not having you botch an otherwise perfect procedure.” Perfect procedure was music to my ears. Then I was wrapped in blankets, helped off the table, and wheeled into the recovery room.
The entire procedure had taken about two hours, and I was in recovery for approximately the same amount of time. Finally back in my room, I was famished, and my recently exercised frontal lobe became quite vocal in demanding lunch. My head felt fine, not even a headache, although my hair was very greasy from the sterile goo in which they had swabbed my head. So I spent the night, grumpily kept awake by the squeezy cushiony things they put on your legs to keep the blood circulating, and the next day was picked up by my ecstatic son and brought home. I felt a bit fragile but otherwise quite myself.
One week later I presented my brain again at the hospital and this time they did put me out. This procedure required the connecting of wires to the leads barely protruding from my skull and then snaking those wires under my scalp and skin down through the back of my neck and around to my chest, where they implanted two small batteries. Pacemakers for the brain indeed. Again, in the hospital only overnight, and then home.
Needless to say, I did not do anything too strenuous or, as they warn you, operate heavy machinery in the next week or so–although clearly I couldn’t wait to climb on a tractor or a snowplow. Seriously, the after-effects were minimal, although as I had been forewarned, the operation produced an “insertion effect,” which I must confess was fabulous. Apparently, brain tissue swells slightly around the points where the leads have been inserted, so you feel just terrific, and not only are your tremors gone but all other symptoms of PD have vanished, replaced with sensations of elation. Even your balance is fine. Forewarned, you know that the insertion effect isn’t permanent and that things will eventually settle down some, but that the DBS will nonetheless vastly improve your condition and permit you to take less (or more, depending on your type of PD) of your medication, and thus treat the disease more effectively. True, your scalp, fortunately well-hidden beneath your hair, feels interestingly like that that of a Klingon’s on “Star Trek,” but not just anybody comes up and runs their fingers through your hair.
You then embark on about six months of visits to the doctor’s office – approximately every two weeks or so, “tweaking” the programming for the battery implants, which in turn control the electrical impulses in the brain. This process is itself astonishing, because you can be sitting there in the office while the nurse practitioner tech-expert changes the programming via her iPad slightly and then, independent of your intention, your right arm begins to gesture, or your left hand clenches or waves. (It does make you wonder about the validity of free will.) Eventually, the visits become more infrequent, especially since programming can now be adjusted remotely, even from places as distant as New York and Australia, for example.
This coming July it will be three years since the procedure, and we have ticked up the little remote control that converses with the batteries in my chest quite a few times, but there’s lots of ceiling space to go, so this can continue for sometime. The trick is to get ahead of the disease and adjust the DBS preventatively as the disease increases, so as to achieve a kind of stability.
Meanwhile, although my walking is still somewhat compromised (I use a cane when I need to but have now left behind me the rollator and the walker), otherwise everything is excellent: speech, writing, tremors, voice, sleep patterns, digestion, mood, and so on. They say that eventually DBS will be the go-to first response for Parkinson’s, circumventing the drugs and skipping directly to electrical impulses instead. If my own experience is any proof, I’d say Bravo!
Although it took a while to thoroughly wash the goop out of my hair, that’s rather a small price to pay for this scientific miracle. I figure that given cataract surgery a few years ago, and a slipped disc that required titanium implants in my spine in 2009, the leads in my brain now qualify me for being a bionic woman–and I couldn’t be more delighted.