Foreword 4: A Patient’s Perspective

I’m not sure who was more nervous: me or the resident of the large downtown Toronto teaching hospital who was given the unenviable task of learning about my medical condition—my syndrome—before a scheduled appointment with the regular specialist. I’ve never been keen on these sessions. They tend to make me feel more like a curiosity than an actual person. At the time, I was in my early 30s (I’m almost 50 now) and for years had been used as a teaching tool.

I remember one day a few years earlier when I had been lying in a bed at the same hospital after having had some tests done. In walked a gaggle of white-coated medicos, stethoscopes in pockets and a busy air about them. They were led by an imperious-looking gentleman who looked at me, said hello, introduced himself and asked if I would mind being the subject of a quiz he was about to give to the five interns accompanying him.

“Okay,” I said.

He immediately lifted my gown and pointed to an 18-year-old surgical scar at my waist. “So,” he queried, “whose work is this?”

Surprised, but not enough to be at a loss for words, I quickly chipped in, “Here’s a hint. It’s not Picasso.”

After some uneasy laughter, one forthright soul piped up, “It’s Dr.——’s work.”

“Correct. Good for you,” said his leader.

And with that the white-coated gaggle moved on, speaking in low tones amongst themselves as they filed out of the room.

Now here I was again, though this time fully clothed and sitting in my wheelchair, wishing this resident would be as quick as his counterpart had been years earlier.

No such luck.

“So tell me about your condition.”

I replied that it was a form of something called Arnold-Chiari. “Oh,” he said. “I’ve heard of that … I think.”

Swell.

And so I went into my layman’s description of Arnold-Chiari malformation, which was a very poor substitute for the precise description you’ll find in this book. (A sample: “Defect in the formation of the lower portion of the medulla [posterior fossa]…. Can be associated, according to the type, with hydrocephalus, raised intracranial pressure, respiratory and cardiac center dysfunction. Infants may exhibit vomiting, mental impairment, and weakness. There is a possibility of limb paralysis.… Dizziness, weakness of the legs, headaches, double vision, or deafness may be present.”)

“Oh,” said the resident.

This was the incident that quickly came to mind when Professor Bruno Bissonnette and Dr. Igor Luginbuehl asked me to write a foreword for Syndromes: Rapid Recognition and Perioperative Implications. As Professor Bissonnette stated to me in his letter: “You should describe how patients affected with complex medical conditions and their families feel when confronted by the impression that medical professionals may not understand their medical condition. The value of this textbook will reside in its ability to help all physicians confronted with these conditions to come to a diagnosis rapidly and decide intelligently on the course of action.”

So here goes: a quiz for the readers of this textbook.

What would you do if, instead of my being able to offer up an explanation of Arnold-Chiari myself, I was suddenly wheeled into the emergency department, unconscious, as happened in the mid-1990s when my condition unexpectedly deteriorated?

And what would you do if I were a child, being wheeled into emergency unit in the same physical state, and my parents were so panicked that all they were capable of doing was to utter the words: “Arnold-Chiari”?

In both cases, the future course of my life depends on the actions of professionals like you.

In the first case, quick-thinking people in my network got the information to the doctors on call. I was stabilized and then sent to another hospital for surgery a few days later. After months of rehabilitation I was able to reassemble the components of my life, albeit in a new shape. Most importantly, my daughter still had a father, my wife still had a husband, my students at a Toronto University still had a journalism instructor, my colleagues in the Canadian magazine industry still had a good editor they could hire.…

In the second case—my scenario only—what if information about Arnold-Chiari wasn’t readily available to you?

I shudder just thinking about the possible consequences.