"Who's going for takeout?" I wisecrack while lying immobilized, scalp peeled back, brain exposed, after having my head cored like a bowling ball.
I'm awake, in an operating room at Vancouver General Hospital. My slightly exasperated neurosurgeon, Christopher Honey, tells me to chill out as some of the medical personnel present turn away and suppress their laughter.
This false bravado is my way of dealing with the trauma I am experiencing from the Deep Brain Stimulation (DBS) surgery being performed on my cranium. Within the next few minutes my guardian-angel nurse who has been holding my hand and doing her best to keep me engaged throughout this seven-hour ordeal will be dabbing my eyes as I switch gears from exchanging friendly banter with her and the anesthesiologist to crying uncontrollably.
This particular crying jag has been brought on not by the recognition that DBS surgery could really enhance my life and ease the burden of Parkinson's disease, but by my realization that evil regimes and their cruel henchmen have been doling out similar operations without local anesthesic on innocent men, women, and children since the beginning of time. These conflicting thoughts concerning the good, the bad, and the ugliness of man's inhumanity to man have reduced me to tears. Indeed, having one's head drilled while being awake is not a procedure I would want even my worst enemy to go through.
The doctors assure me that this part of my surgery won't hurt a bit due to the local anesthesic. However, I'm also advised to keep my mouth ajar when the drilling starts and not to clench my jaw, unless I want to grind my molars to dust. For over two weeks after the surgery, my jaw still ached when I yawned.
Trust me, you do not want to ever feel the vibrations of a drill digging deep into your soul or recall the smell from your smoking skull. Even some of the veterans of the operating room looked away or found something else to occupy them when the drilling began. It was one of the toughest days of my life, and no amount of reading up, talking to, or listening to any others can prepare you for your date with DBS.
On the other hand it was also one of the most fascinating days of my life, as I listened to and watched Honey the only neurosurgeon in B.C. who performs this type of surgery coax, cajole, and lead his team of about 10 medical personnel through the procedure. There is no doubt who is in charge here. It's maestro Honey. Here is a man who loves his work, and even though he has performed this type of procedure over 300 times, you can tell by the tone of his voice that he is engaged as he alternately lectures, explains, and guides his charges during the long seven- to eight-hour surgery.
Honey, who's 45 but looks younger, is a former Rhodes scholar and a director of the World Society of Stereotactic and Functional Neurosurgery. If ordinary surgeons were NASCAR drivers, he would be Formula One. On this day he has neurosurgery fellows from Mexico, England, and Egypt observing and assisting him throughout this procedure.
Deep-brain-stimulation surgery is an operation during which electrodes are implanted in the brain and an electrical signal is used to shut down the region of the brain that causes unwanted symptoms. In people with Parkinson's disease, normal movement is replaced by unwanted tremors, rigidity, slowness of movement, and loss of balance. DBS surgery involves the drilling of two quarter-size holes on each side of your skull. Two electrodes are implanted, the effects seen on the opposite sides of your body.
The electrodes are then attached to a stimulator (similar to a pacemaker) buried underneath the chest skin that can be turned on and off. Surgical operations once caused permanent lesions in the affected areas of the brain, but since the late 1990s this procedure has been supplanted by deep brain stimulation, which has the advantages of safety, reversibility, and adjustability.
Only 10 percent of Parkinson's patients meet the criteria for DBS. I was considered a good candidate because I have had Parkinson's disease for over 10 years; still respond well to levodopa and other anti-Parkinson's medications; still experience wide swings between feeling good "on" and feeling awful "off"; display medication-induced uncontrolled movements called dyskinesia; am in good general health; and have a good support network of family and friends.
My date with destiny starts at 5:30 a.m. with a shower, and at 6:30 the porters arrive to wheel my bed to the CT lab for the mapping of my brain. The first step of my operation involves the placement and fitting of the stereostatic head frame. This medieval-looking cage it resembles something you would see in the chamber of horrors in Madame Tussauds wax museum is bolted to my skull at four points in order to immobilize my head for the duration of my operation. The insertion of the sharp needles hurts until the local anesthesic numbs my skull, a convergence of state-of-the-art brain surgery and old-fashioned mechanical surgery. The head-frame apparatus will be bolted to the operating table to hold my head in a fixed position.
I realize that my upcoming DBS surgery means little to the busy staff performing their daily tasks, but I have made my bed now I must lie in it!
Marooned in the middle of the hall, outside the CT facility, with four doctors sticking needles into my scalp and bolting in the anchoring screws, I get a kick out of watching the horrified faces of the patients, visitors, and medical personnel who dare to glance my way as they scurry past my bed. I try to lighten the proceedings with a request for the matching shoulder pads and a plea to "send me in coach, I'm ready to play."
Next it's into the scanner and its roller-coaster ride, complete with laser lights and overwhelming sound effects. When I ask the team how many tickets for another ride, someone fires back: "about 5,000".
There are a couple of events that I recall vividly. During a particularly crucial phase of my operation, I feel a dry tickle in my throat, and I begin to cough uncontrollably. This is not good, especially when the surgeons are attempting to insert, with millimetre accuracy, an electrode deep within my brain. The operation comes to a standstill, and there is a hush in the room. I feel at this point that my life could be in danger as I fight to suppress my cough. Honey assures me that this is only a temporary condition and that my cough should subside without me focusing on it within 15 minutes. Sure enough, 15 minutes later the cough disappears and the procedure restarts.
After the right side of my brain has been drilled and the electrode implanted, Honey informs me that it's my turn to contribute to the proceedings. This is why I have been kept awake: now I must answer Honey's questions about how I'm feeling. It is also an opportunity for the team to test my range of motion when the electrical current is applied. As the current is turned up, a wave of pinpricks flows down my left side. Honey rotates my left wrist as we engage in a discussion about the looseness of my wrist joint. After we establish a comfort zone for full range of motion, one of the fellows is instructed to turn up the dial to find my top end. As the current strengthens, I feel my left eye start to twitch and my cheek tighten around my mouth.
After the first electrode has been set in place, the procedure is repeated on the opposite side. This is where Honey's skill and experience shine. He has left it up to one of the visiting fellows to determine the correct coordinates on the left side of my brain. I hear the fellow call out the applicable coordinates, but he has failed to take into consideration that my head has been bolted in at a slight angle to alleviate some stress on my neck. Honey quickly determines that these coordinates are wrong and rattles off three different numbers. I am relieved that this guy is in my corner.
Near the end, while my scalp is being sewn back together, the nurses begin to clean up the room. I hear some whispering about the whereabouts of a surgical sponge. This talk escalates into a full-blown search. I listen intently to this crisis unfolding behind me and finally bid the attending fellow to stop sewing and come around and get in my face. I ask him point blank: "Is there a sponge left in my skull?" He calmly informs me using his thumb and forefinger that my burr holes are about the size of a quarter and the missing sponge is 20 centimetres by 10. Soon after, the sponge is recaptured and the universe is again unfolding as it should.
As I drift into unconsciousness for the final hour of surgery, I call out to all those responsible my thanks and a "See you later”¦bye-bye." I'm woken in the recovery room to find I am now the proud owner of a stimulator embedded in my chest with visible wires running under my skin, behind my ear, and into the battery pack. After the first night of morphine and hourly wake-up calls from the nurses to test my vitals, I'm on the road to a quick recovery. The stitches are out, my body and head are finally washable again, and my locks have been shorn down to a Sinéad O'Connor length. I'm back on my full medications, 23 prescription pills per day.
I won't know if my operation has been successful until my brain swelling goes down enough to allow for the start-up of my stimulator. This process will start before the end of August and could take weeks, even months, to test, set the levels, and have my meds adjusted to an appropriate level.
Was it all worth it? There is no guarantee of success, and there were certainly points in the process when I would have gladly opted out. But the promise and the hope for improvement in the 30-to-70-percent range were just too tempting to pass up, even after 15 months on the waiting list.
The support I received before my surgery and have seen since has been very moving. It's the hope of better quality of life to share with my family and friends that drives me forward. I'm lucky to have the option of treatments like DBS surgery, and as I look farther ahead to the possibility of stem-cell-research breakthroughs, not having or believing in these options is what would really scare me.