copyright 1999 the harfolk press

MY SECOND LIFE

Chapter Ten
Part 2 of 3

DOING THE OTHER SIDE

Mostly I was excited by the prospect of the second operation, because of the
possibility of further alleviation of my symptoms and also because I was
going to be a medical pioneer. Esther was more apprehensive than I was
because of the unknown factor.  One of her aphorisms was "the patient has
the operation; the family lives with the consequences." Howard and Emily
were both apprehensive and excited - they were fearful of a screw-up but
were excited by the possibility my having my mobility restored. They were
both still teenagers, and however loyal and loving they were, they must have
suffered terrible embarrassment from having a father with such a
disconcerting and strange condition.
 That night as I lay in the hospital waiting for the operation the next
morning, I was excited but not relaxed. In fact, I was really on edge. I
tossed and turned and did not sleep well at all. I knew the next day's
operation was going to be even longer and more demanding than the last one,
and that I needed to be well rested but sleep would not come. About 3:30 in
the morning I turned the light on and read for a while, but I don't think I
absorbed much. As morning came, I heard the hospital gradually waking up,
tired residents and interns and nurses going off their shift, greeting
grump, half-awake colleagues coming in trying to be civil. I was ravenously
hungry, but was not allowed to have any breakfast, and I was pretty well
immobile because I was off my medications.
 I was prepared for this operation to be longer and more complex and
demanding than my first operation, though it would replicate much of it.
First there was the fitting of the stereotaxic frame on my head. Again they
used the old steel frame, because with the size of my head I again could not
use the newer titanium frame. The O.R. staff were used to the newer frame
and had to remind themselves of the eccentricities of the older frame. It
was old hat to me, so to speak, or so I thought. I had repressed the memory
of the single painful part of the first operation - the injection of local
anaesthetic into a nerve just above my eyebrow. It was excruciating, but
lasted only a minute. Then followed the CAT-scan, the wait in the surgical
waiting room and finally I was rolled into the operating room.
 In addition to Dr. Tasker and Dr. Lozano, there was a third neurosurgeon in
this procedure, Dr. Michael Munz, a Neurosurgical Fellow working here under
the supervision of Dr. Tasker and Dr.Lozano to learn more about the
sub-specialty - stereotaxic surgery and functional neurosurgery. From his
qualification as a surgeon, Munz had been studying for ten years, meaning
thirteen years after his medical degree. He masked his professional
concentration by seeming to be pretty blasé about the whole affair, treating
it as just another day's work. I was quite cross with him because he was
pricking my balloon of excitement and enthusiasm and deflating me. I knew we
were all in for a long hard day and decided that it would be a good idea to
start the morning off with a joke. When the stereotaxic frame was on and
Michael Munz was removing some hair from my head, I said, "It's a good thing
you aren't trying to make a living as a hair stylist, Munz, you'd go
bankrupt, unless you're trying to be a Sweeney Todd."
 "Who is Sweeney Todd?", he replied.
 "Munz, are you a complete illiterate?  Those were the days when barbers
doubled as surgeons, or was it surgeons doubling as barbers. Don't they
teach you anything about the history of medicine here?"
 My joke fell flat. Munz became awfully quiet. Someone observed: "Michael's
really pissed off."
 I really had been pretty tactless, suggesting to a professional of Munz's
calibre that he was illiterate. He just didn't know of the Broadway musical
of the late 1970s "Sweeney Todd, the Demon Barber of Fleet Street."
 Dr. Lozano broke the ice by saying: "Dr. Munz, Mr. Harshaw makes even
neurosurgeons laugh at themselves."
 He and Dr. Tasker were ready with the Black & Decker drill and soon I could
smell the acrid bouquet of the drill going through my skull. Then the
operation became dull and tedious for me as they probed through my brain,
recording its activity cell by cell, asking me what I felt or perceived.
 Dr. Munz had created a computer programme that mapped the brain. This was a
different "map" than the one used in the first operation because the left
Globus Pallidus was being investigated rather than the right and the
sub-thalamic nucleus had never been mapped before. This programme could be
used to aggregate the data for patients in a study group, and show how the
current patient differed from the average. Work such as this enables
Lozano's and Tasker's research surgery to be performed with lower risk than
would otherwise be the case.
 About mid-way through the thirteen cross sections, we were in uncharted
territory, making the first recording in medical history of cell activity in
the sub-thalamic nucleus, one of the target areas for electrode placement.
Because this area of the brain had never had cell activity recorded, there
were no be any tell-tale noises from the computer to help our brain mapper
know exactly where we were.
 Excitement gave way to tedium and then to boredom, a bit like sailing for a
long time with a constant wind on one tack with perfectly trimmed sails. But
there was always a sense of adventure lingering because the surgeons were
exploring where no one had been before. Also, as the recordings of cell
activity were made with the insertion of electrodes in mind rather than
lesioning, the perspective was altered. The globus pallidus was approached
from a different plane.
 Implanting the two electrodes called for an even greater degree of
precision and accuracy than the choosing the location of the lesions in the
first operation.and it had to be done in as sterile environment as possible
to minimize the possibility of rejection. The electrodes were to penetrate
the brain by about six inches, at mid head to just below the nose and below
the eye.
 We were now about nine-and-a half hours into the operation itself, sixteen
hours since I had woken up, and over twenty hours since I had been taken off
my meds. This procedure called for stamina and endurance that was stretching
my resources to the limit.
 It was exhausting for the surgeons too. Of the team of three, two were in
the operating room at all times, along with the neurophysiologist and the
neuropsychologist.
 At the critical moment in the surgery, I had to urinate. I held off as long
as I could, so much so that I was shaking. Lozano and Tasker were implanting
the electrodes. Under no circumstances could my head move or the whole
procedure would be compromised. "Let him pee his pants", said Lozano.
 There had been a shift change and the O.R. was short-staffed. Jan Duff, Dr.
Lang's trial coordinator, and Dr. Nestor Galvez, his clinical fellow, were
pressed into service as nurses, but they didn't know where to find a bed
pan. They almost made it, but not quite. As the warm urine flooded over me,
I felt a combination of anger and humiliation. The surgeons' concern was to
keep the open area of my brain sterile and uncontaminated - they were the
focus of my anger at the humiliation of wetting my bed for the first time in
over forty years. In a perverse way, it was positive, because it took my
mind off the operation and the change in focus somehow gave me new energy.
 I felt no effect from implanting the electrodes, probably due to a
combination of physical exhaustion, the bed-wetting and brain fatigue from
all the prodding and poking. After they were inserted, Dr. Munz closed me
up, a simple matter, and the operation was over. It had been twelve hours
since they had begun fitting the stereotaxic frame on me.

The aftermath of the second operation was totally unlike the first.  When I
was wheeled into the recovery room, Esther, Howard and Emily were there
together with Peter Paterson and Stephen Booth. I held up my hand in a
defiant Churchillian "V", but I did not feel victorious. I burst into tears.
I was completely exhausted and, unlike the first operation, I had no sense
of whether or not the operation had been a success.
 I was in the recovery room for over an hour. I tried to sit up, but I could
not. I was so tired that my body would not respond. With the intense
weariness came a feeling of depression, a feeling that carried over to the
next day. My overriding feeling was exhaustion instead of exhilaration. I
had not been prepared for anything but good news or victorious feelings.
 For most of the day after surgery, I felt exhausted and depressed. Since
the operation, part of my face seemed to be paralysed and I had a most
unattractive drool. Several different groups of doctors had appeared to hook
up the probes in my brain to a stimulator, all with indifferent results.
 At the end of the day, Dr. Tasker, wearing his ever-present turtleneck
sweater, appeared at my bedside with a stimulator and asked how the day had
gone. "Not well" was the only response I could manage.  I had come to
appreciate the balding slightly portly man whose avocation is ornithology.
Ron Tasker is the doyen of the very small and exclusive fraternity of
functional neurosurgeons around the world.
 He hooked up the stimulator. I groaned to myself, "not more of this."  He
tried only a few settings. Then, a buddha-like look of inner peace came over
his face as he said, "You'll be alright. It works!"
 It was the first reassurance I'd had and the first moment of optimism after
the operation. Those few words of encouragement carried me for a week.
 The practical implications of the post-operative trauma were generalized
facial swelling, transitory facial paralysis which caused my drool, and some
problems with gait. As a result, my face felt puffy, I couldn't control my
swallowing very well, hence the drool, and I felt funny walking. The
psychological effect of this trauma on me and my family was substantial. I
had accepted the high level of risk in the operation, but had not been
prepared for these frustrating, ambiguous after-effects. I don't know if
they had been anticipated by the doctors.
 Because there was so much postoperative swelling, Dr. Peter Ashby, the
physician who was doing the electrophysiological measurements, was concerned
that the data he was getting were inaccurate and of limited utility. He
decided that it would be necessary to bury the electrodes below the surface
of my skull for six weeks. All the brain cell recording and the poking and
prodding of the brain had taken a toll; it needed a rest to recuperate. On
December 23, the leads to the electrodes were buried under my scalp to
ensure that they would not be contaminated while my brain got back to
normal.
 In the days following the operation, I realised that there was considerable
improvement in the muscular rigidity that came from my Parkinson's. I was
able to reduce my daily dosage of Sinemet CR and Pergolide very
substantially. This was an unexpected bonus of the operation. When the two
electrodes were inserted in my left globus pallidus and sub-thalamic
nucleus, my brain cells were moved, but not destroyed. This movement, though
tiny, was enough to alter the brain's electrical circuitry in much the same
way as the pallidotomy did in the first operation. No one knew how long
these benefits would last, but the doctors thought they would be in addition
to the benefits that would be obtained through chronic stimulation.