When Steve Csorba describes his battle with throat and neck cancer, he uses a word that one might not expect him to. He says that he was “lucky” to get cancer while living in Edmonton.
No, he wasn’t fortunate to get sick. That would be ridiculous. What he means is that if a person is going to have to fight neck cancer, Edmonton is the best place in the world in which to be.
Csorba had the cancer removed — and his throat and jaw completely rebuilt. Tissue was “harvested” from his left arm and used to reconstruct his throat. Plates were custom designed and a new jaw was created from them.
“They peeled my face off and broke my jaw. My face was pinned to the top of my head. And I came out of it wondering if I was in heaven,” Csorba says, as he takes a sip of his coffee.
He still has some issues. Eating takes three or four hours a day, and choking is a risk, because he’s swallowing using muscles that were never designed to swallow. In fact, a couple of weeks before he sat down for an interview, Csorba needed to call 911 because of a roasted chickpea that got lodged in his windpipe. But, if he didn’t eat and swallow, the muscles would atrophy and he would quickly lose the ability to speak.
“I’m Hungarian,” he smiles. “I like to talk. I like to eat.”
“I’ll be bringing a patient-centric viewpoint. There tends to be a clinical-centric viewpoint that tends to exist in medical boards.”
The collaborative process between doctor and patient, and the use of design to help aid surgeons — these are the things that make IRSM, located in a rather nondescript main-floor wing of the Misericordia Hospital, a mecca of medical research. Walk through the front doors of IRSM, to the left off the Misericordia’s lobby, past the gift shop. Imagine mixing the dizzying technology of a sickbay fromStar Trek with a hint of a costume parlour. Go past the waiting room, and you’ll find artisans in lab coats, thin brushes in their hands. They apply paint to prosthetic noses and jaws. There are eyeballs and ears, all being custom-crafted for patients.
Go further into IRSM, and you’ll find a scanner that creates a 3D image of a patient’s head. There’s a surgeon sitting in front of a computer. The wand in his hand is attached to a flexible arm; as he moves it through the air, he feels resistance as if he’s pushing a drill against a human skull. With a push, he turns the mock drill “on,” and the screen in front of him displays a 3D rendering of the patient’s head. The screen shows the cut in the patient’s skull growing as the doctor continues to “drill.” He’ll be performing the surgery on the patient next day; but, in the lab, he can rehearse, the same way a musician prepares in the days leading up to a sold-out concert.
In another lab, patients who have had procedures done on their throats work on re-learning how to swallow, to make sure as little food as possible goes down into their lungs. They work on learning how to talk again.
From planning surgery to prosthetics to the post-op rehab process, the IRSM has a simple raison d’être. And that’s when a patient walks through the doors, he or she is in the IRSM’s care for life. The lab uses computers, advanced design and a heck of a lot of empathy to custom-fit solutions for patients who have already undergone a lot of trauma. The IRSM welcomes patients who have head and neck cancers. The institute has worked with patients who have suffered traumatic facial injuries, from accidents to cow stompings to severe animal bites.
“We are working away from volume-based health care to value-based health care,” says Hameed Khan, the IRSM’s executive director. “And it all has to be centred on the patient. It’s about bringing back that patient to normal activity, not just getting rid of the cancer.”
IRSM is a joint initiative between the University of Alberta, Covenant Health and Alberta Health Services. And, as Csorba found out on a recent visit to a conference in San Francisco, it is recognized as a world leader in its field.
“IRSM is recognized as the best in the world in reconstructive medicine,” says Csorba. “There is so much respect from the rest of the world for what is going on here.” There was a time that getting a prosthetic fitted was a lot like buying a T-shirt. There were small noses and big noses. Narrow jaws and wide jaws. And a doctor picked the one that best matched the patient, more or less, not one perfectly crafted to fit the patient.
But IRSM has changed the mindset. Industrial designers work alongside doctors. Patients’ features are measured, and measured again. Surgeries are planned to be as minimally invasive as possible. Now, more is being done with fewer surgeries. And, if prosthetics are needed, the designers don’t work off templates. The noses, jaws, ears and eyes are custom-made. Noses are brushed and painted so they match perfectly with the patient’s skin. A patient can get a “summer nose” and a “winter nose,” with each matching how skin colour changes through the seasons.
“Measure twice, cut once,” says industrial designer Ben King. It’s an old carpenter’s adage. Except, King isn’t talking about cutting wood so he can make a table. He’s talking about surgeries and prosthetics that change people’s lives.
“We looked at what was capable within multiple disciplines rather than isolated silos,” he says.
Logan works on modelling surgeries, and she uses the word “prehabilitation” to describe how the clinic sees the time leading up to when the patient is first seen to when that person is wheeled into the operating room. Patients who are informed, patients who are relaxed, patients who are in the best shapes they can be in — outcomes match the preparation. Logan talks about making sure patients bulk up as best they can. Csorba says that meditation and relaxation exercises are vital.
Constantinescu works out of a lab that looks like an x-ray room mixed with a recording studio. She can watch scans of how a patient swallows — a task that most of us take for granted. When was the last time you actually thought about swallowing? But, for a patient fighting neck cancer, it’s a skill that has to be relearned.
“The question is, how can we improve and inform future care?” she says. Csorba, an artist who is well known throughout Edmonton, lost eight years of his life. While he estimates upwards of $250,000 worth of surgeries were performed in order to save his life — and his face — he still couldn’t work during most of that time. He lost a contract with Apple. He said, as a patient advocate, he wants to better spread that message: Even though health care in Canada is not privately billed, getting sick is still financially devastating. The patient loses a job. Family members leave work to care for their loved one. It’s a domino effect.
That’s why it’s important to treat patients with as few surgeries as possible, says Khan, to not only save lives, but to give patients their lives back — so they can go back to work, be with their loved ones, follow their passions.
Csorba is painting again. He’s coached soccer and helped fundraise through his art for a Green and Gold team to go to Spain.
And Csorba feels a kinship with the IRSM doctors and designers who not only saved his life, but his way of life.
“We get along so well because I’m a crazy artist, and they’re crazy artists.”
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This article appears in the February 2019 issue of Avenue Edmonton.