Field Notes From a Medicare Disaster: Three

You would think that I would remember the exact whereabouts of that neurosurgeon's office, wouldn't you? I mean, come on,  he was the focus of hope. Yet that detail is ensconced in some brain cell no longer accessible. I know this: it was either in St. Mike's itself, on a floor with plain-as-Jane offices, or, it was across Queen Street in the Medical Arts building. ( It is perilous to stop a car at its front door so as to deposit a disabled patient for his appointment, because its front door is actually a catty corner door. Yet it must be done, otherwise a halt and lame patient is forced to cross one of Toronto's busiest streets.) The neurosurgeon's office was off a dark, narrow corridor that also served as a waiting room. There were people sitting on hard chairs in various states of misery waiting their turns. I found myself watching the gait of every patient who walked past me. I felt a ridiculous spurt of envy if they walked normally. Even more disgusting, I actually consoled myself with the poisonous certainty that their brains must have gotten up to some other malicious though invisible trick because no one comes to see a neurosurgeon about something trivial.

When his name was finally called, at least three quarters of an hour late, which had prompted a desperate bathroom hunt, he walked down the long corridor shuffling his feet, not quite upright, not quite balanced, shoulders rolled forward. I had by then decided that not being able to walk well changes everything -- from social life (one only goes where one knows there is a bathroom close by) to basic personality (walks for pleasure are over, so there are no more hi-how-are-ya-what's-happening conversations with neighbors which is a punishment for a man with a buoyant personality, in this case one who had also made a lifelong habit of saying hello to every street person, asking if they had a place to sleep, and offering advice on how to find same). I'd watched my father,  another sociable man, deal with being house-bound too, and it had been very hard. There were outbreaks of cabin fever, arguments over nothing fought with passion. It was osteoarthritis that crippled him. For much of his adult life he'd been an avid golfer and a ferocious handball and racquet ball player, and before that, he'd been so devoted to hockey and football that he'd flunked first year university because he was on both of his school's teams. He golfed until his late 80s -- until he made the mistake of looking at X-rays of his back and shoulders which made clear exactly how much damage osteoarthritis had done.That's when he finally permitted himself to take a cortico-steroid-- prednisone--to damp down the inflammation and suppress the pain. It's a powerful drug with nasty side effects, such as thinning skin which bruises and sloughs from the smallest pressure. His hands and arms soon sported bandages and gauze. As soon as he looked at the X-rays, the pain became something he could no longer ignore and golf was over.

Yet for quite a while longer he was still able to walk with his usual gait, that happy martial rhythm with a hop-limp on the right leg thanks to the hip replacement after he retired. And he was still able to do his PT-- push-ups and sit-ups and stretches-- every morning. He explained that it hurt, but that he had to do it. If he didn't keep moving, the arthritis would become so bad he'd be unable to walk, period. That day finally came after he ruptured an aneurysm that ballooned out of his aorta. He was 89 by then: when the aneurysm burst, his blood pressure collapsed and he dropped like a stone to the kitchen floor. The young emergency surgeon who took care of him informed him of the survival probability of the repair surgery -- it's like 10% Sam, he said, what do you want to do? Figuring 10% was better than zero, Dad said go ahead, do your work. That meant cutting him open like a fish to be filleted, or as he liked to say, from his gullet to his zatch. His recovery was long and tortuous. After that, he only walked short distances in his condo using what is called a rollator, and settled into a wheelchair at the very end. He stayed sharp, though. And so he never stopped berating himself for failing to diagnose his own aneurysm. He'd felt a thrumming in his belly while doing push-ups before it burst, he told me. He should have known.

But what would he have done about it, I wondered, if he had put two and two together before that rupture? Would he have asked for surgical intervention? Or would he have thought: I'll just leave it be and hope for the best. That question had haunted me as the appointment with the neurosurgeon came closer. I'd been reading the science papers on normal pressure hydrocephalus which we'd asked the neurosurgeon to investigate and which the CT scan would shed light on. The treatment is a shunt inserted into the brain which redirects the overly abundant cerebral spinal fluid down through a tube into the gut where it is harmlessly absorbed. But about 40% or these surgeries fail to alleviate symptoms and brain surgery is not for the faint of heart -- in other words, for this high risk, only 60% of patients get any reward. Worse, the papers I read asserted that there is no reliable way to judge which patients will do well after this surgery and which won't. The CT scan would reveal enlarged ventricles, yes, and enlarged lateral ventricles have been correlated with unsteady gait and other hydrocephalus symptoms. But just having enlarged ventricles is insufficient to make a firm diagnosis: tapping the spinal cord and measuring the fluid flow is a more reliable determinant. Yet a spinal tap has risks of its own serious risks. What if the neurosurgeon recommended it? What if something went wrong with the tap, never mind the insertion of the shunt, and he ended up worse off than before yet without conclusive information about why his movement was disordered? What if he couldn't think as well as before? He makes his living with his brain. His intelligence is central to who he is, or so I thought at the time. I had just finished writing a book on the nature of intelligence. In the course of researching and thinking through what I'd learned, it had become increasingly clear to me that intelligence is displayed by all living things, right down to the smallest bacterial cell, because it is a function that emerges from interaction with a dangerous world. Further, there is no dividing line between brain and body, mind is body.







The neurosurgeon sat with his back to the door, at a very ordinary faux wood desk. There were two unremarkable chairs for visitors. No one around here was wasting the public's pennies on decor. He had his computer on. The screen displayed a cross sectional image of a brain, except it looked like a top down view. I could see the ventricles, white snakes among black and white structures, and big gaps where the brain seemed to have pulled away from the skull. The image was so clear I almost fooled myself into thinking I understood it, that if I looked closely I might spot weirdnesses --lumps, bumps, tumors-- though I had never seen such a scan before, so why would anything about it look right or wrong to me?

The neurosurgeon was dressed in scrubs again, but this time, instead of a surgical cap, he was wearing a do rag on his head, a red one. I didn't even recognize him until he spoke, because it had been months, five to be exact, since he came to that hospital room and asked us to get him this CT scan. If by chance there had been a tumor growing in the brain shown on the screen before him for all that time, it could have acquired significant size by now and this CT scan would not show it. He pointed to the ventricles on the screen, and said that they did look enlarged, but not a great deal bigger than they should have been, and he said there had definitely been shrinkage of the brain, though that was consistent with age and didn't matter much. (I was familiar with the case of a man in France who had a CT scan done late in his life which revealed that half his brain was missing entirely, probably always had been missing, yet his performance on IQ tests had always been perfectly normal and he'd been able to live well and hold down a job with no trouble at all.) The neurosurgeon asked more pointed questions, asked him to stand and walk for him, felt his arms, tested his reflexes. Finally, he said he needed more information before he could diagnose because there were many possible reasons for unsteady and increasingly awkward gait. We had already ruled out one possible cause --a middle ear issue. He'd been referred by his fill-in family physician to an otolaryngologist. When he walked into that man's office, where the patients spilled out into a corridor with no chairs and the wait was several hours in duration, the otolaryngologist had taken one look at how difficult it was for him to walk to the examination chair and said, with alarm, I can see by your walk that this is not an ear problem, this is a neurological issue. But we asked him to do the appropriate tests anyway. The results had been forwarded to the neurosurgeon. They were all negative.

Look, the neurosurgeon said, let's see if we can find out more with an MRI. I'll order one for you, you can do it here in the hospital, you won't mind if the appointment time is like three in the morning, right? That way we can get it done faster.

I wanted to protest but I kept my mouth shut. I was getting better at keeping my mouth shut. Getting him up for an appointment in the middle of the night, in the winter, was going to be no fun whatsoever. But what choice did we have? If you must stand in a hall for three hours because there are no chairs left in the waiting room due to the fact that your otolaryngologist's secretary books patient appointments at five minute intervals, you learn to suck it up and do it without protest. If that doctor orders tests done at a place many miles from where you live, in a lab located in a suburban strip mall that looks at best iffy as a place where decent scientific evidence may be gathered, you go and submit to their requirements anyway, because what other choice is there? If a hospital neurosurgeon says the fastest way to get an MRI done in his hospital is to get up in the middle of the night, even though you are not well and nights are worse than days, you say right, thank you. Ready aye ready.

You'll be contacted, he said. In the meantime, there is nothing I can offer you.

Yet we still liked him. He was personable. He was reasonable. He was razor sharp. And above all, he was reluctant to tap a spine or open up a skull in order to fish around in a brain until he was sure there was a reason for it. This alone earned my trust. My father always used to say, when it comes to a choice of surgeons, pick the one who has the most experience with the operation in question. If you must choose between two surgeons of equal experience, favor the one who is reluctant to cut.

The MRI appointment secretary sent a letter with detailed instructions. The date? Mid February. Four more months.