In Two Voices

A Patient and a Neurosurgeon Tell Their Story

Linda E. Clarke, Michael D. Cusimano

• Publisher: Pottersfield Press
• Year: 2019
• ISBN:
  9781988286754
• Topic: Medizin
• Subtopic: Medizinische Theorie, Praxis & Referenz

For a decade, Linda Clarke and Dr. Michael Cusimano had offices across from one another at St. Michael's Hospital in Toronto. She worked in Clinical Ethics and he was a staff neurosurgeon. They knew one another to say hello, to nod as they passed one another on the stairs, to wish each other a Merry Christmas. Michael's patients sat in the chairs along that shared hallway, waiting for their appointment with him. For ten years, Linda heard their talk outside her door, smiled at them as she passed by, tried to give them their privacy. She was always impressed by the things people endured.

Ten years into her work, Linda got sick; she left her job and, weeks later, she sat in one of those hallway chairs, waiting for her appointment with Dr. Cusimano. In the blink of an eye, she was a neurosurgery patient and he was her surgeon.

Linda and Michael wrote In Two Voices together: it is the intimate account of Linda's surgery with Michael as her surgeon. The story builds a piece at a time as Linda and Michael tell each other their experience and then respond to one another's writing. As the relationship shifts from one of patient and surgeon to one of Linda and Michael as colleagues and friends, they encounter surprises as their trust and mutual understanding develop. Here is an unprecedented view into the experiences of illness, care, and compassion, an intimate picture of the experiences, challenges, skills, and commitment of a surgeon. The worlds of both surgeon and patient are framed by a most critical and delicate surgical procedure.

After the Surgery

Michael:

That Same Day

In the Recovery Room now. She is awake, knows her own name. Recalls me. I am glad, but we are not out of the woods yet. My resident has already written a note: 13:30 hours – scan ordered – let’s see how much residual blood there is.

Like so many of my days, I can’t stop here. Every day it goes something like this:

I have to go off to the second surgery of the day. A thirty-eight-year-old man, just married last year, developed seizures caused by a large mass in his right temporal lobe. He thought he was fishing with his dad as a kid again and assumed they were dreams. It has happened four or five times, always the exact same thing. But then he went into a Grand Mal attack, fully lost consciousness, fell to the ground, became stiff as his eyes rolled back. He was frothing at the mouth, then shaking terribly until he stopped a minute later, incontinent of urine, and having taken a bad gouge out of his tongue. His wife witnessed the whole thing, and knew her hopes for her young marriage had gone terribly awry.

It looked like a primary brain cancer to me and I told them this was my concern. He wanted the mass out. Unfortunately, I told them, we could never get it out totally but I would do my best.

Delays and delays. Finally, we start his surgery. The positioning is routine, we do the planning, and the case goes smoothly until we get to the dura. The dura is tight as a drum – this is bad – more mannitol, hyperventilation, and we put his head up more. That slackens the tension his brain is under a little but we will have to work rapidly, before his brain herniates against the edges of the large window I’ve created in his skull. That herniation would cause engorgement of the veins as they get pushed hard against the edge of the boney opening of the skull. His brain would squeeze out of its cavity, like toothpaste being forced out of its container. It’s a larger opening than I would like, but a large tumour and a lot of pressure do better with more space.

We open the dura in an X shape – we call it a “cruciate opening” since it resembles a cross. The brain starts to come out of its resting place, moving inexorably towards us. It’s obvious the tumour is malignant, because the surface of the brain is salmon-coloured rather than its usual whitish hazelnut-cappuccino-coloured surface. I say to the resident, “This has got to go.”

Two hours later, what looks like a huge hole is all that we can see remaining of the area that had been consumed by the malignancy. Quick section – glioblastoma multiforme, as we had suspected. The average survival is thirteen months, but he is younger than the usual patient and hopefully he will get more time … It’s been dealt with, for now.

It is dry – no bleeding – thank God. We had enough bleeding for a lifetime this morning.

We take care to close carefully – we cannot let our guard down. A student asks if she can throw in a few stitches. I agree but I am worried we will be ostracized again by the OR administration for going a few minutes overtime. It’s painful to watch her struggle. She obviously hasn’t practised enough knot-tying. I show her again and she throws down a couple more. We are done. The head dressing goes on and I step out to dictate his operative report. I relive every minute of the operation in my head like watching a movie again – for the second time. It is vivid. I ask the transcriptionist to send copies to his family doctor. The family doctor has no idea he is so sick – he hasn’t seen him in years. Off to the waiting area where his wife and family are waiting.

I pass by Linda’s husband, who is sitting reading.

The second patient’s wife breaks into a quiet trickle of tears and his mother and father take each other and her in an embrace as I tell them the story. My life is full of stories. I wonder whether I am privileged or saddened to be a part of these.

He looks like he will be okay for now, but there is more treatment down the road. Let’s get him through this stage right now. They thank me.

Neuro ICU, The Beginning

I am back to the Recovery Room. It’s 16:00 hours (4 p.m.) now. Linda has just gone up to the ICU. The nurse has gone to tell her husband. I catch the elevator up to 9. There she is – wide awake, she knows who she is, where she is, the date, and what has happened. I’m glad that I haven’t hurt her memory. She is moving her arms and legs well. I check for a “drift,” a subtle sign of weakness or loss of coordination of her limbs that might signify pressure or damage – there is none. Her intracranial pressure or ICP is running at 18 – anything under 20 and we are usually pretty happy. This is all good. She says she has some headache and is a bit nauseated. She has a good understanding of what I am saying and I explain what happened during the surgery.

I hope the bleeding will not start up again. If it does, we will need to open her up this night and she might not be as lucky. “Let’s sit tight for now,” I tell her, the bedside nurse, and my residents. I jot down my findings and comments in her chart that sits at the end of her bed with her vital signs sheet – a large flow chart for nurses to monitor every vital function and test and drug administered to her. A CT scan is arranged but it cannot get done immediately because that evening the people who do the scans are busy with a patient, a man about my age who was struck by a car.

How It Might Have Been

We go see the victim of the trauma and then see his family, who reminds me of my own. His ten-year-old son reminds me of my son, who is the same age. There are about twenty people in the waiting room. A Portuguese family. I think – Another young wife, another young wife. He has two kids. As I start, a hush falls over the room. When I explain that his injuries are so severe that he is now brain dead, the wailing begins.

“He’s going to come out of it, isn’t he, Doctor?” says his brother, forceful and energetic for the family. I can imagine what he’s like on a construction site. He doesn’t yet understand.

I explain that his brother has basically died but the machines have kept him alive until now.

There is nothing I can do other than give them information. Tell them the truth. Her husband, their brother and son and their dad will not survive. The son, who has sat beside me like my own son, starts to cry loudly – I feel that cry – it’s like my son’s cry but with such an intensity, I have to pull back my own tears. They are almost coming but I pause and just hold them. I pray for this man and his family in that instant of pause. I tell them I will be back and I will have the nurse let them in to see him very soon. My residents and medical student listen intently and then follow me quietly out of the room, where a tsunami of fear and tears has started flowing. As I leave, I ask the nurse to contact the chaplain. I will need to come back later that night.

Onwards and Onwards

By 17:50 hours (5:50 p.m.), on the day of the surgery, the scan has been done and Linda is back in the ICU. My resident calls me as I look through a pile of reports, notes, and charts that have populated my desk during the day. I put aside the disability forms I need to complete on a man who can’t work because his tumour has robbed him of his vision. Linda’s scan shows that the ventricles, the water chambers of the brain that we had worked through, are basically full of blood; this includes both laterals, the third and the fourth ventricles. Immediately, I know it will be a long time clearing but as long as the bleeding doesn’t restart, she should be okay. Sure, she might need a permanent shunt, but she will be fine. Hopefully, the tumour won’t regrow. I pause, I think …

The pause can’t last more than a second but, on his end of the telephone, my resident notices. Let’s just sit tight, I tell him. We should keep the drain open – we’ll just let it drain as necessary if the pressure goes above fifteen centimetres above the ear level.

I go back to see her at 21:40 hours (9:40 p.m.). Shift change has passed. It is the third shift of nurses I have seen today. Linda has a new nurse who has just given her some Stemetil. Linda has had some headache and was nauseated, the energetic, smiling nurse tells me.

Although drowsy, Linda recognizes me as I touch her shoulder.

“Everything is okay, Linda. You rest tonight. I’ll see you in the morning.”

Before I go, I stop to see the young man whose family received such terrible news earlier today. They are huddled around the bedside. Three family members, of the twenty there, hold rosaries as his wife pours tears onto his motionless hand. I can see by the nurse’s notes and the monitors that my initial impression was correct; he isn’t going to make a recovery. Enough for tonight. I touch the nurse’s shoulder and stand there for what seems like a minute and then I leave. I will talk to her in the morning.

As I am leaving, the resident with whom I had done Linda’s surgery calls me about another person in the ER. The police have brought him in; his alcohol level is in the eighties, enough to kill most people. He is drowsy but his scan shows a small bleed. We decide to repeat his scan and reassess him in six hours.

On the train home, I read through the remainder of reports just as I get to my stop. It’s raining outside but the walk in the rain is relaxing.

When I get in, the house is quiet. I find my wife asleep in my son’s bed. I tickle her ear a little and she shivers awake. “Oh. I fell asleep!” I kiss my son’s foot and then I tiptoe in to my daughters’ rooms and give them a gentle kiss on the shoulder – they are both sound asleep.

Back in the kitchen, I gulp down the dinner my wife had left for me. She is now giving a bottle to my youngest son. He stares at me a little – like a true “Stranger in the Night” and then falls asleep.

As soon as I put my head down on the pillow, I feel peace. I am asleep within a few seconds.

At 4 a.m., my pager vibrates and I am awake again – is it the alarm already, I wonder, then I realize it’s my pager – I walk downstairs and telephone my resident, who says that the man who came in intoxicated is agitated and more awake. His scan is unchanged. The family is still by the bedside of the man. Linda is fine. No further surgery for now, I say. I go back to sleep.

And Onwards

The next morning Linda is alert and orientated. No drift. When I ask her to raise both arms up in the air with palms facing the ceiling and with eyes closed, as though she would be holding a box containing an extra-large pizza, both hands and arms don’t budge a bit. Patients with subtle problems in attention or weakness on one side easily fail this test and require the neurosurgeon to look more deeply into the “drift” and search for a reason it’s happening.

“Nauseated and severe headache overnight but GCS 15” is the report from the nurse who has just started at 7:30 a.m. A GCS, short for Glasgow Coma Score, of 15 is excellent. It means she is alert and knows who she is, where she is, and what date/time it is – in short, she is doing really well.

When I inspect the drain exiting her head, I see that she is draining sanguineous fluid that looks like a fine deep rose wine. I take down some of the green surgical towel that we have wrapped her head in. The underlying dressings are dry. There has been no leak around the tube coming out of her brain. It’s doing its job – measuring the pressure and allowing the brain fluid, called cerebrospinal fluid or CSF for short, to drain rather than build up in her head and cause dangerous elevations in intracranial pressure. However, overnight she has drained 186 cc of CSF. This means her brain is not doing a good job of absorbing the fluid it creates every day. Without the drain, the pressures would build up in her head and put her in a coma. We will have to wait and be patient.

Should I consider adding a “clot busting drug” like TPA? The recent research in subarachnoid hemorrhage in baboons showed excellent results. I am sure we could get rid of the clot. But if she starts to bleed again? That would be worse. We are best to wait. I can see that she wants to have some news. I tell her things are stable and that the blood is blocking off the flow of fluid and we have to wait for things to open up again on their own. It may take a while but everything else looks okay. I sit down. She asks about the light. It’s the blood in her CSF that is making her sensitive to the lights – the nurses should shut off the big fluorescent light above her bed. That should darken it enough since there isn’t a window in the ICU.

I go see the man whose brain is dead but whose body lives on. His wife is still at his bedside. She is alone with her rosary and her husband. We have a talk in the quiet room. She will discuss these important matters with her family.

The second day Linda drains 318 cc of CSF.

The third day she drains 361 cc of CSF. But we are controlling her ICP and she is headachy, nauseated, and photophobic but okay. The nurses report she has slept – finally. I tell her and James that we need to be patient.

On the fourth day, the residents try closing the drain and hope that she develops some of her own drainage internally, rather than externally into the plastic buretrol and bag to which she has been attached since her surgery. That small tube coming from under her green towel has been keeping her alive. Her ICP climbs during the day. My neurosurgeon colleague, who knew her from pre-op, happens to be by and lets the nurses know that if her ICP climbs past 25 cm for five minutes then they should drain it. She gets some headaches back as her ICP climbs. Although she only drains 10 cc that day – she has problems with headaches and nausea all day. We try for another day – but it’s another day of headaches and nausea. The nurses are great at helping her through it all. But what should I do?

I decide that maybe she will open up her natural CSF passages a little. We should wait. A permanent shunt at this stage could have its own problems and likely block off from all the blood still around. That could lead to a series of repeated shunt surgeri...

Table of contents

• Cover
• Copyright
• Table of Contents
• Foreword: A Bridge Between Two Solitudes Brian Goldman, MD
• Linda: Introduction July 2009
• A Story In Two Voices
• What Happened That Day
• Aftermath, Fallout
• After the Surgery
• Afterword: Thinking About “In Two Voices” Michael Rowe, PhD
• Afterthought: Telling Stories in Medicine: Drilling Down: The Backstory
• Glossary of Medical Terms
• Acknowledgements
• Linda E. Clarke
• Michael Cusimano, MD, PhD
• Back Cover