Debbie,
When I had my pallidotomy in Dec '93, as Dr. Ronald Tasker, my
neurosurgeon, made the lesion in my right globus pallidus, I could feel the
rigidity leave the left side of my body. It has not returned.
I attach Chapter Eight of my book: My Second Life.
copyright 1999 The Harfolk Press
may not be reprodced without permission
Monday, November 30, 1998 revise
Chapter Eight
NEUROSURGERY
... the brain is the most interesting, complex and wonderful thing in the
universe ... and it's a wonderfully exciting thing to study and be in
contact with. ... The brain is you, it's not just biologically or
genetically, it has all your experience, it's you.
-Oliver Sacks
When I returned to the hospital on Tuesday, December 7, 1993, I was ready
for surgery, eagerly looking forward to the operation even though I was
apprehensive. Other than my overnight doing the pre-op testing I hadn't
stayed in a hospital since I was twelve years old having my tonsils out, and
I enjoyed the novelty. I brought a good supply of books and music tapes.
Because the operation was unusual, everyone seemed to want to know about me
and I was being paid a lot of attention. I felt quite important.
I was sharing a room with a man from Huntsville who had an inoperable brain
tumour. His wife was with him constantly, and I sensed, from overhearing the
doctors and nurses, that he did not have long to live. Even so, there was a
sense of calm surrounding the couple as they prepared for his inevitable
death.
For the first few hours after I was admitted, I was too busy having my
medical history taken, for what seemed the nth time by a nurse and then
again by a surgical resident, and then being visited by Jan Duff, Dr. Lang
and Esther and Howard to take in the reality of what was going on beside me.
I dimly recognized that this couple were preparing for the husband's death,
but there was no weeping and gnashing of teeth; rather, there was hope. As
the wife left that Tuesday evening, she turned to me and said, "You will be
in my prayers tonight. God bless you."
She had enough room in her heart for me, when I would have thought her
whole being would be focused on her husband, on her family. I was touched
and inspired by her generosity of spirit.
Later in the evening, Dr. Lozano and Dr.Tasker, the neurosurgeons, came to
see me and discuss the operation. Dr. Andres Lozano is tall, with
close-cropped black hair and wears plain wire-rimmed glasses. If anything,
they made him look younger than his thirty-six years. He had the aura of an
ascetic about him. He was the expert in pallidotomys, having done thirteen
previous ones at the hospital. Dr. Tasker, known behind his back as "The
Lone Ranger", and with a reputation for iconoclastic brilliance, was
Lozano's mentor, having pioneered the thalamotomy, where lesions are made in
the thalamus, another procedure used to reliving Parkinson's tremors. In my
operation Dr. Tasker, although the senior, would be the number two surgeon,
learning the pallidotomy procedure from Dr. Lozano. With me they were a
"good guy, bad guy" team as they discussed the risks and potential benefits
of the operation. Tasker spelled out the negatives, while Lozano emphasised
the potential benefits.
The operation I would be having was a stereotaxic pallidotomy. Stereotaxic
refers to the finely calibrated metal frame that would be fixed to my skull
for the operation. It fulfils two functions: it provides precise three
dimensional co-ordinates for the positioning of surgical instruments within
the brain; and it is bolted to the operating table, immobilizing the frame,
and, therefore the head. Pallidotomy refers to the globus pallidus,
literally "pale globe", a part of the basal ganglia which is the deepest in
the skull. The pallidus regulates the braking action of the brain; in
Parkinson's patients the brakes are being applied too heavily, causing
poverty of movement and clumsiness. (Parkinson himself had noted that
sometimes, if patients of "his" disease had a stroke, the characteristic
Parkinsonian tremor was less evident, although muscle weakness more than
made up for the eased tremor.) In the pallidotomy, the neurosurgeons make
some lesions on the pallidus which would result in scarring. When properly
placed, the scars relieve the patient's symptoms.
Stereotaxic surgery dates back to the nineteenth century when its use was
pioneered by veterinary surgeons. It was not until the 1930s that the frame
was used for surgery on Parkinson's patients. By today's standards, these
early procedures were crude, even barbaric. The procedure was little more
than trial and error and the results were often less than satisfactory. In
one American case reported in 1951, first the motor cortex was disconnected,
then other connecting fibres were cut and finally the head of the caudate
was severed, which finally relieved the Parkinson's symptoms. It is hard to
imagine that there was much brain function left.
Meanwhile, in the 1960s, the potency of L-dopa medications became
recognized as far superior to herbal extracts and their synthetic clones,
and to some extent replaced surgery as a treatment for Parkinson's. But
L-dopa has its limitations. In my case and many others, it produces
dyskinesia as a side-effect. As these limitations became recognized,
stereotaxic surgery was undergoing a revolution in technique resulting from
the application of computer technology and miniaturization of surgical
instrumentation. Technology assisted as well in understanding the geography
of the brain and the specific function of many of the parts of the human
brain.
As the two neurosurgeons discussed the operation with me, I realized for
the first time how much responsibility for its success would fall on my
shoulders. I would have no aesthetic because there would be no pain. I
needed to be alert and mentally clear so I could give timely and accurate
responses to the surgeons' questions, particularly about the location of the
optic tract, a scant one millimetre from the globus pallidus, and itself
only one millimetre in diameter. Should the probe damage the optic tract, my
vision could be impaired. If the procedure resulted in bleeding, a stroke
could result, with all the complications that come with it, including the
possibility of death.
Somehow, all the cautions and potential problems that Dr. Tasker discussed
were insignificant when Dr. Lozano described the potential benefits of the
operation: moderation of dyskinesia, easing of muscular rigidity on my left
side (the operation was going to be on the right side of my brain ) and a
lessening of the reptilian appearance my Parkinsonian mask had given me. Dr.
Lozano had estimated the risk of something going seriously wrong at between
two and three per cent. The two surgeons were putting benefits and possible
hazards of the operation clearly so that so that I would be able to sign a
"Statement of Informed Consent", a document which says that I understand the
risks of the procedure and consent to it being performed.
I realized how desperate my situation was. That videotape at our dinner
party had put it to me very graphically. Realistically, I was only months,
and at the best a few years, away from having to be put in a chronic care
facility. That was enough incentive for me to give the go-ahead. A
ninety-seven per cent chance that there would be some improvement in my
Parkinsonian symptoms seemed to me good odds and I was determined to
approach the operation as positively as possible.
Even so, I could not forget the risks involved. During the night before the
operation, I was tossing and turning and not sleeping well, my unease
increased by being off all my meds. The nurse had been adamant that I would
have neither medication nor breakfast. "Doctor's orders," she said. My
appeal to Dr. Lozano was rejected out of hand. As I lay awake, I looked out
the window of my hospital room and beheld a garish blue neon sign that
flashed "Cardinal Funeral Home".
"Is that where they send the ones that don't make it?", I wondered. A
variety of images of death, embalming, coffins and cremation flitted through
my mind,
At 7:30 in the morning, Dr. Lozano arrived to take me down to the radiology
floor. I sensed that there was still a mixture of wonder and humility hiding
behind his shyness, qualities that would not inhibit his single-minded
dedication to the tasks of the day whether it was teaching his mentor,
Ronald Tasker, the fine points of pallidotomy, or saying during the
operation, when I said it might be nice to go to the bathroom, "Tie a string
around it." I was definitely on edge with, I hoped, my bravado masking
trepidation as I carried on a conversation about leading edge technology
with the surgeon.
When we got to the radiology room, I was to have a titanium stereotaxic
frame fitted around my head and then to have an MRI-scan on my brain. To our
intense frustration the frame did not fit. "Shit", we said in frustrated
unison.
"I have used this frame on over 300 patients, and you are the first one it
hasn't fit", said Lozano.
I explained that I had an unusually large head, size 8-1/4, and that I had
always had difficulty getting a hat to fit.
Lozano replied, "I don't think you realize just how serious this is. No
frame, no surgery." He then remembered an older steel frame which he thought
might be larger.
Back I went to my room while they looked high and low for the older steel
frame. It was still early - about 8:15 am. Determined not to be disappointed
by this turn of events, I phoned Tony Graham at the Wellesley, where he is
Chief of Cardiology, and asked him to check with their neurosurgeons and
find out if they had a frame that would fit. They did not. Now, I really
felt dejected. I was told later that Dr. Lozano was kidded about this by his
colleagues: "Andres, do you always send your patients out looking for
surgical equipment?"
After an anxious forty-five minute wait, a hospital porter came to take me
back to the fitting room. Drs. Lozano and Tasker were there, waiting. "I
found it", said Lozano.
"Let's hope it fits", was my gloomy response.
It did, just.
Dr. Lozano fitted the finely calibrated steel stereotaxic frame around my
head and injected local aesthetic at four points where the frame was going
to screwed into my skull. The injection of the aesthetic was the most
painful part of the operation - and it was a pre-operative procedure. When
the syringe's needle hit a nerve just above my eyebrow it was excruciatingly
for about a minute. But it made the rest of the fitting and adjusting
bearable.
Dr. Tasker reached into a drawer and took out a Black & Decker cordless
drill. "They're better and cost a tenth of what the surgical supply houses
try to foist on us", he said. In some British hospitals, a stainless steel
manual brace and bit is used, supposedly because patients are frightened by
the sound of an electric drill.
Dr. Tasker parted the skin and drilled four holes into but not through the
bone. The frame was held in place with set screws which Dr. Lozano tightened
against my skull with a crescent wrench. I looked like a blacksmith's idea
of Frankenstein's monster.
The downside to using the steel frame was that it could not be used in an
MRI-scan; the surgeons would have to make do with images of my brain from
the older CAT-scan which are not of such high quality. I was taken from the
examining room on the radiology floor to the CAT-scan room. It took about
half an hour to get a set of brain films.
At about 10:45 am, an orderly wheeled me on a gurney to the operating room,
steered it parallel to the operating table and locked the wheels. I moved
myself over to the table. Dr. Lozano bolted the frame surrounding my head to
the table, removed a swatch of my hair with barbers' clippers, checked
co-ordinates, made a small "x" on my skull with a marking pen and gave it a
squirt of local aesthetic. Dr. Tasker picked up the Black & Decker and
drilled a hole three millimetres in diameter through my skull. The only
sensation was the acrid bouquet of the bit going through bone.
The low tech, home toolbox part of the day was over. OR 6 on the second
floor of the Toronto Hospital, Toronto Western Division is the neurosurgical
room, and it is filled with computers which do everything from recording
individual brain cell activity to mapping the geography of the brain. Dr.
Tasker assured me, the Black & Decker notwithstanding, that only the very
latest equipment and instruments were being used. "We could not have
performed these procedures with anything like the precision and accuracy we
do now as recently as two years ago," he said.
As they began literally probing into my brain on their way to the globus
pallidus, the surgeons were in effect working blind. They could not see my
brain cells and the navigation was done by a neurophysiologist with a
detailed, computerized knowledge of the brain's geography who relied on the
"noise" the cells produced when touched by a probe. The probes are very
fine, small instruments, about six inches long and two millimetres in
diameter, capable of probing individual brain cells and accepting data from
them.Without the information generated by the probe, the OR team would be
like a child's birthday party playing Pin the Tail On the Donkey.
For a patient, a pallidotomy is a long, sometimes tedious, but demanding
and exciting operation. It was a real adventure - being wide awake while
they were fixing my brain. During the first four hours, five cross-sections
of the globus pallidus, each 15 mm square, were probed, cell by individual
cell. Each time the surgeons probed a different cell, they asked me either
to stick out my tongue (a small child's delight, but for an adult - me - the
novelty wore off pretty quickly), clench and unclench my left hand, or make
a kicking motion with my left leg. Sometimes, one of the staff would move
the leg or arm to see if passive activity had a different effect on cell
response than active movement. It seemed odd - and marvellous - that the
neurosurgeons could pinpoint brain cells within a cross-section and predict,
based on surgical experience, what specific part of the body that cell
controlled.
The information generated by the cell probe and muscle movements were all
stored in a computer for current use and future study. The Western Hospital
has developed a proprietary software programme which generates extremely
precise three dimensional images of each of the sections of the brain being
examined. All the data were input before deciding the location of the
lesions, the single critical decision in the whole operating procedure. As
well, the surgeons stimulated cells to determine the location of the optic
tract. When the tract was stimulated, I saw cascading pins of light.
The surgeons consulted the neurophysiologist, who had been doing the brain
mapping about the optimal size and location of the lesions. The data
generated two images: one of my brain and one of the average of my brain and
the brains of the thirteen other people who had had pallidotomys before me.
Using all this information, the surgeons and the neurophysiologist decided
on the location of the lesions.
The decisive moment was approaching. A probe was heated to 90 Celsius to
make the lesions. A heated probe is capable of more precise and accurate
lesioning than a scalpel. (Cryosurgery - using a frozen probe which creates
lesions by freezing the tissue - is another technique. The neurosurgeons
believed the instrumentation for that technique is clumsier.)
As Dr. Tasker positioned the probe at the precise location in my brain and
then heated the probe, making the lesions, I felt the rigidity leaving my
left side. It was an eerie, supernatural experience and it only took ninety
seconds.
Dr. Lozano asked me to pretend that I was putting a light bulb in its
socket with my left hand. This is a common clinical test used to observe the
degree of slowness and clumsiness in a Parkinson's patient. Watching me, Jan
Duff, who had conducted the pre-op tests, said with triumph in her voice,
"That is better than his best 'on.'"
The surgeons had transformed my life.
I moved myself back to the gurney to go back to my room, and shook hands
with the surgical team - how often can you do that right in the operating
room? I was wheeled back to my hospital room where Esther, Howard and
Stephen Booth were waiting anxiously. The telephone rang. "Its probably for
me", I said jumping from the gurney and walking quickly to the phone. It was
Emily, wanting to know how the operation had gone.
"What's all the commotion", she said. I told her it was just the hospital
staff clucking about like mother hens: patients are not supposed to jump off
gurneys to answer phones on the way back from major brain surgery.
That evening, in a bout of post-operative euphoria, I decided to walk down
to the lobby and get a Coke and a pizza. I only made half the round trip. My
legs buckled as I started back from the hospital's pizza place. It was
nothing more or less than utter physical exhaustion. No harm was done.
The very day of my operation, 1,080 copies of my book A Transforming
Influence, a biographical memoir of Archbishop Howard H. Clark were
delivered to our house. I felt this was more than coincidence; it was
Providential. I gave autographed copies with the inscription "with thanks
for transforming my life" to each of Dr. Lang, Dr. Lozano and Dr. Tasker and
to Jan Duff.
Dr.Tasker and Dr. Lozano had worked a miracle on me. My left side was no
longer rigid, and when I was on meds, I had no left side dyskinesia. It
worked normally. Even though I had been fully involved in the whole
operation I found it hard to understand how making lesions on such a small
part of my brain could have such a profound effect.
The recovery time from the operation was very short. I was home two days
later on Friday and on Saturday evening went out to a large party for David
Warren's Idler magazine. Before the operation I would have hesitated to go
to such a party and Esther would have tried to persuade me not to go - she
was more aware than I of the difficulty people had in dealing with me and of
the effect of my dyskinesia. David Warren and his people at the magazine had
put up with me through the worst of my Parkinson's and I was warmly greeted
the staff of the magazine who all could see the change in me more than I
could. Everyone noticed the absence of dyskinesia. I realised people were
much easier with me socially, and they no longer had to give me a wide birth
to avoid the hazard of dyskinesia.
It all seemed too simple to have such a profound effect.
Here is the end of my poem, "Lazurus."
V
Waiting. Endlessly ...
Preparation, three days of tests
Word games, memory, spatial,
Meds on ... meds off ... performance
Videotaping me walking, moving and immobile
The Social Contract, so-called ...
Richard Hooker looks down in horror
The perverted use of noble thought
Destroys the polity.
Hence the waiting
For an O.R.
False alarms ... then
Go back home.
VI
Skull bolted to the table
Immobilized
For the duration.
Wide awake. No Sedation.
The only sensation
he acrid bouquet
Of the drill going through bone
Thee hundred minutes in the O.R.
Alert.
It worked.
An end to deformed harmony.
Technology and Humanity
Combine to perform a miracle
There is wonder in life
In God's creation
How do I thank the medical team
They did their jobs
Professionally
Gave me new life.
resurrection
Good cheer and labour on some more
Reap the joy I radiate.
Walking
Laughing.
Your care released me from that older trap.
I am Lazarus.
-----Original Message-----
From: Debbie White <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Sunday, September 05, 1999 8:41 PM
Subject: Surgery for rigidiity
>I seem to remember reading awhile back about brain surgery (pallidotomy, I
>think) to address rigidity. Has anyone heard anything more about this? Are
>they doing trials somewhere? Thanks.
>
>Debbie White
>
>[log in to unmask]
>
