A patient and a neurosurgeon tell their story

An excerpt from In Two Voices: A Patient and a Neurosurgeon Tell Their Story.

Linda, the patient, writes:

Years later a compassionate optometrist acknowledges my eye pain and frequent headaches. I try different lenses, various prescriptions. When they don’t work, he arranges for me to see one of his mentors at the School of Optometry at the University of Waterloo. It’s a long drive but James and I are both hopeful so the distance passes quickly. The doctor welcomes me into his examining room and I am happy to agree to have his students observe. He examines my eyes thoroughly and tries different machines, lights, prisms. I am genial, co-operative. At the end of the exam, he tells me there is nothing to explain my pain. He turns to go, trailing his students behind him.

I speak up as the gaggle is leaving. I’d like to say something, I ask. My voice wavers, my cheeks are hot. The group stops. He nods. I thank him for examining me and then I say, “Just because you can’t find it, doesn’t mean there’s nothing there.” They look at me, slightly confused, and continue on their way out.

I am bathed in shame.

As a member of the hospital clinical ethics service, I was close to those who work to care well for those who are sick. I met patients and those who love them. I shared tables with people struggling to do the right thing, the compassionate thing. I heard stories of the suffering of pain uncontrolled, the rupture of loss, the anguish when a person dies badly. I heard the frustrations of resources wasted and shortages of time, shortages of basic items, and, worse, shortages of beds and all that means.

“What is the thing that frightens you the most?” I once asked an assembled group of health professionals who, every day, witness these things, and more. “Of everything you have seen, what are you most afraid will happen to you?” The discussion started slowly, thickening as it flowed. Paralysis, dementia, pain, locked-in syndrome, ALS, head injury. At its heart, the discussion was about fear, about making that jarring, wrenching move from this side to the other side. No matter how good we are, how well and compassionately we care for the sick, we are terrified we will become one of them. And we will.

Michael, the neurosurgeon, writes:

The grunting stops. She is still unconscious. It’s not the anaesthetic. The bleeding is relentless. Surgeons feel the need to do something. I need to do something, I think, or she’ll die. Perhaps we will have to switch to a craniotomy – make the opening bigger and get down and get it under control. Right now we are working through a hole the width of the canister of a pen. We need more space. We need to do something.

My brother is there –“You’re okay. Keep irrigating. It’ll settle down. We had a case where it lasted thirty minutes but it eventually stopped.”

It keeps bleeding. Without a view, we could plunge the scope too deep – through her fornix or worse – lose her memory instantly or worse. Hold it still. Keep irrigating.

I glance up at the clock – the bleeding continues. It takes forever.

“Please call for the craniotomy set.” Pam already has. It’s ready.

“Do you want to switch to a craniotomy?” she asks calmly.

“No, we’ll wait a little longer. Let’s keep working.” Be patient, I say to myself. It will stop. It has to. It keeps bleeding.

Lord, guide me. I recall the Black Madonna. I think about her. In the middle of the worst storm of Linda’s life, I am thinking of the Black Madonna. I had just learned there was a statue of her in Poland, another near my parent’s hometown. Please intercede on our behalf. Guide us and work through our hands.

I glance at the clock again. Forty-five minutes have already passed since I stole my last look. She’s still comatose. Breathing is stable – I think.

“Mike … Mike.”

“Yes.”

“I’ll probably have to intubate her.”

“Just wait, Bob. A couple more minutes.”

If it doesn’t clear, we will move to a craniotomy. I am hoping we won’t have to. But we need to do something, or else we will lose her.

Eventually, we start to see. The redness starts to clear. We can see…,it gradually improves. It’s almost been too long. Finally.

She starts mumbling again.

“Linda – can you hear me?”

“Yeah. I can hear you. What is happening now?”

“We had some bleeding and it’s clearing up now.” The speeding train is slowing down and coming for a stop in the station, I think.

Within minutes, we are back to where we had started. The weather has cleared. We are in the calm seas again. We can see that sanctuary of the ventricle again. There is a little clot still covering the area of the bleeding. We think we’ve gotten all or almost the entire cyst out. It’s hard to say for sure. Time will tell. We were on the final bit when the bleeding started. Probably, the vessel was stuck to that final bit. I can’t be certain there’s not a tiny piece of the cyst left. I’m not going to remove the small blood clot that has developed and has sealed the torrent. I don’t want to ever again experience the feeling that all surgeons eventually learn to dread but cannot escape sharing: a place they go alone with their patient.

Linda E. Clarke is a writer and Michael D. Cusimano is a neurosurgeon. They are the authors of In Two Voices: A Patient and a Neurosurgeon Tell Their Story.

Image credit: Shutterstock.com

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