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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.