For my next few posts I wanted to get the point of views of the different people involved in this whole ordeal. I wanted to begin with my wife; in this post she recalls the day of my diagnosis:
I was in a Bigby drive-thru about to get a coffee en route to my clinical site in a neighbouring city when Chris called. He didn’t sound like himself. His voice was wavering as he told me he was in the neuro-ophthalmologists office. He went on to say he had been having double vision and it had progressed to the point that he was unable to work. He had told Dr. Pearson (his PCP, and also a faculty member), who had promptly referred him to Dr. Kaufman (the neurologist). My whole body was already sinking as he went on to say with a breaking voice that the doctor thought the brainstem might be involved. An MRI was scheduled shortly.
I knew Chris didn’t want me to tell anyone else what was going on at this point, and I had patients scheduled in clinic – I couldn’t just cancel. But I knew this was serious. I proceeded to drive down to Mason, and as soon as I arrived I scanned my schedule. I asked around to see if any of the other residents in clinic could take my last few patients, but everyone had a full schedule. So I personally called my 4pm patient and rescheduled – quite a bold move by me as we do not set our own schedules – Deep down I knew something was going be found on that MRI. Here’s why:
Chris had struggled with vertigo since I had known him, more than 12 years – we had met my sophomore year in college on the tennis team, and started dating the following year. Chris’s vertigo was positional, brought on by laying flat or looking up. The former meant he slept slightly propped up with 2 pillows and the latter was problematic when he served on the tennis court. He had seen an ENT when we were first together and it was thought to be BPPV (benign positional vertigo), special maneuvers were performed with no relief, and thus the ENT had recommended an MRI to rule out any masses. However, due to his vertigo and inability to lay flat, Chris declined at that time. And I did not think much more of it for a while. Several years later, his sister, Amy, an Emergency Department physician had also commented that positional vertigo does not usually persist the way Chris’s had and thought he should get imaging and more workup, and as I got further in my medical training I better understood what she was saying. In addition to the vertigo as the years passed I had noticed Chris’ poor balance, which always seems odd as he was so athletic. On the tennis court his groundstrokes were great, but he always seemed to be teetering backward/sideways after his shots – his balance was his weakness. In Dominica, on a hike up a river bed in the jungle, while others scampered up the rocks, we were left waiting for Chris as he stumbled his way up – I wouldn’t let him hold our son while we hiked. And more recently I had noticed there were times at home he would seem to stumble for no reason.
This was serious… fortunately I had a very understanding and sharp attending that day in clinic. I briefly explained why I had to leave early. I expressed my fear; that he had had concerning symptoms for many years, and she wisely said the chronicity of his symptoms were a good sign. My doctor brain knew this to be true, at the time I only felt dread. Speeding along the highway overtaken by both racing and paralyzing thoughts I mistakenly drove the wrong way, towards the hospital, and then had to turn around to go to the MSU clinical center. I remember at the time it seemed ridiculous that in all my rushing, I had gone the wrong the way.
I finally arrived in the clinic, slightly out of breath. I saw Chris, his head between his legs in the small waiting room within the clinic. He looked up. I wanted to be strong and tell him everything would be okay. He was still waiting for the results of the MRI. “The receptionist has scheduled an appointment with the neurosurgeon tomorrow morning at 8am – that can’t be good,” he said. We waited.
I don’t remember the exact order of things, but I do remember that Dr. Kauffman, a large man with a presence, was extraordinarily kind. I think he first asked about Chris’ symptoms. As Chris spoke my first reaction was sadness/hurt/shame all in one. I knew it was self-centered and petty but I felt hurt that Chris had not shared his symptoms with me. He had been experiencing double vision for 3 days and I hadn’t even known. He reported noticing slurred speech for several months and hadn’t mentioned it to me. But then I recalled I had not even been present at home to allow him to. In the past 5 days I had worked two 24 hour shifts over the weekend due to a scheduling error for an intern, and the previous night I had stayed up most of the night working on a presentation that morning. The little time I had been home had involved me sleeping, working on my presentation, taking care of my son and a friend’s birthday party somewhere in the midst. We had both been working hard, and Chris NEVER complains. I felt shame that all those symptoms he had been experiencing over the years had been pointing to a brain mass and I hadn’t done anything – I hadn’t pushed him enough to follow up. I felt I had failed both as a wife and as physician.
We moved to the room across the hall and, as I remember it, Dr. Kaufman said something along the lines of “I can’t be sure, but it has the appearance of a dermoid tumor, a benign tumor”, he went on to say “I don’t know if it can be removed or not”. He brought up the image of the tumor. It was large — taking up the expanse of the 4th ventricle and pushing on neighbouring, important structures. And it was obvious – a person without a medical background could have spotted it easily on the scan. As he talked more, the image seemed to stare at us. I didn’t want to see it anymore. I wanted to turn the screen off.
The office was now closed, Dr Kaufman had given us time beyond his scheduled day, and at the end of our visit he gave us both bear hugs. The hug stuck with me. It concerned me. I thought he said it was benign – but the hug felt like he wanted to express his condolences. We had come in different cars and as we walked out of the building into the parking lot, arm in arm, with tears in our eyes, it felt odd to have to drive separately home. We called Chris’ parents first. They were driving home to Chicago from Omaha, NE and on hearing the news immediately changed course to Lansing. Chris’s sisters were next. Over the next few hours as the news spread, I was amazed at how Chris’ family stepped up. His older sister had contacted her friend from her undergraduate studies, a neurosurgeon for advice. His cousin, a surgeon, who was in France, at 2 in the morning was trying to contact surgeons she knew.
The next morning we anxiously arrived at our appointment with the local neurosurgeon. The visit was brief, but brought relief as he confirmed he felt this was a benign epidermoid tumor. He described the surgery, and recovery which sounded straightforward, 1-2 days in the ICU, 1-2 days on the floor, 2 weeks recovery total. He seemed confident. Little did we know what we were in for.