Archives des Neuro | The Ottawa Hospital Foundation

Published: April 2025

Three times a week, you’ll likely find Chantal Theriault kickboxing to stay in shape — physically and mentally. It’s a sport she picked up easily from her father, Jean-Yves “The Iceman” Theriault — a world kickboxing champion. It’s the strength she developed from this sport, along with her sense of humour, that helped her navigate through an astonishing medical diagnosis five years ago. At the age of 37, Chantal learned she had early-onset Parkinson’s disease — this was one hit she didn’t see coming.

The distressing news for this otherwise healthy young woman was delivered during the peak of the pandemic in the summer of 2020. Initially, there were many more questions than answers. Still, never one to back down from a challenge, no matter how insurmountable this one appeared to be, Chantal came to terms with the news, educated herself, and put her trust in the committed physicians and researchers at The Ottawa Hospital (TOH).

Chantal is all too familiar with our hospital but from a different vantage point. She’s a program coordinator in the Critical Care Department. She’s been a part of the TOH family for 22 years — she started in Admitting Services and worked her way to where she is today on the Intensive Care Unit team. It’s a team for which she has the utmost respect, and she plays an important role.

“Any resident that must do their rotation in the ICU comes through me. I do the scheduling for the Civic and the General campuses. There are about 300 residents that come through the year,” explains Chantal.

Working in the ICU for so many years, she has garnered the utmost respect from her colleagues for the high quality of her work and her pleasant demeanour.

It started with tremors in her hand

As Chantal was busy with her work, during the height of the pandemic, she developed a tremor in her arm. “It started in my hand and then made its way up my arm, and eventually I could feel it in my leg a little bit. I initially thought I pinched a nerve in my neck.”

“When I walked, he noticed that my right arm didn’t swing. That was a big sign. After a few other tests, I learned I had early-onset Parkinson’s.”

— Chantal Theriault

As an avid kickboxer, she exercises regularly and has dealt with a minor injury or ache in the past. She was going to try her chiropractor, but she kept putting it off and eventually, it was recommended she might want to see her family physician, as the symptoms progressed.

After several tests, including an MRI, which showed nothing concerning, she met with a neurologist at The Ottawa Hospital, who put Chantal through several physical tests. “When I walked, he noticed that my right arm didn’t swing. That was a big sign. After a few other tests, I learned I had early-onset Parkinson’s.”

At that point, Chantal’s mind just completely shut down, as she describes it. “The two people that I think of right away when I hear Parkinson’s are Michael J. Fox and Muhammad Ali. I wondered, ‘What the hell do I have in common with these people?’”

What is Parkinson’s disease?

Parkinson’s disease is a movement disorder that affects the nervous system. The symptoms start slowly but progress over time, and although tremor is a common symptom, slowness and stiffness are additional features present early on. The risk of Parkinson’s increases with age, and men are more likely to develop it than women. When a person is diagnosed before the age of 40, it’s often referred to as early-onset Parkinson’s.

That day of her diagnosis, Chantal went home and had what she describes as a moment of woe, and then she moved on — grateful to work at The Ottawa Hospital and to be surrounded by some of the best care team members in the world.

“There will be mobility issues someday but that's down the road. Right now, I have things to do. I have a life to live.”

— Chantal Theriault

“I don’t know what this means or what the progression timeline looks, but I’ve got a team behind me — I’ve got this. There will be mobility issues someday but that’s down the road. Right now, I have things to do. I have a life to live.”

All about Parkinson's

For many people, the first time they heard about Parkinson’s disease might have been when Michael J. Fox shared his diagnosis in 1998. For many others, the first time they heard about Parkinson’s might have been when someone they know received a diagnosis — a parent, a friend, a co-worker, or maybe even themselves.

Learn More

She also used humour to help get through some of those early days of living with Parkinson’s, including a new tattoo that she got done on the inside of her right arm. It reads, ‘Shaken not stirred’.

Another big step in this new journey for Chantal was meeting Dr. Michael Schlossmacher, Director of the Neuroscience Program at our hospital. “He is the most incredible human being — super supportive, super down to Earth,” says Chantal. “He takes the time, and he encouraged me to bring a family member during my follow-ups if they have questions.”

That’s also around the time where the impact of research came into play for this young woman. She’s enrolled in two research projects at our hospital, including one Dr. Schlossmacher is leading.

The global impact of Parkinson’s research

It’s research that drives Chantal. She’s put all her efforts into helping to advance treatment options and hopefully to help scientists find a cure for the disease someday. That’s what motivated her to create the Kick It for Parkinson’s fundraiser, which supported The Michael J. Fox Foundation for Parkinson’s Research — an organization that has funded research here at The Ottawa Hospital.

In December 2024, an international team led by Dr. Schlossmacher received a US$6 million grant from the Aligning Science Across Parkinson’s (ASAP) initiative, in partnership with The Michael J. Fox Foundation, to continue their work on reduced sense of smell in Parkinson’s disease — a testament to our leadership in research.

“Our interdisciplinary team is on the leading edge of this topic, making discoveries that could one day impact diagnosis, prevention, and possibly, patient care.”

— Dr. Michael Schlossmacher

“Understanding the loss in sense of smell in Parkinson’s is having its moment right now,” says Dr. Schlossmacher. “Our interdisciplinary team is on the leading edge of this topic, making discoveries that could one day impact diagnosis, prevention, and possibly, patient care.”

More recently in another study, the first clinical trial of its kind showed interpersonal psychotherapy may be better than other types of psychotherapy for treating depression in patients living with Parkinson’s. People with Parkinson’s often experience depression, but there’s been little research to show what type of psychotherapy works best. 

The trial, led by Dr. David Grimes, Director of the Parkinson’s Disease and Movement Disorders Clinic and Dr. Diana Koszycki at the University of Ottawa, assigned 63 people with Parkinson’s and depression to one of two types of psychotherapy for 12 sessions. The group with interpersonal psychotherapy had significantly lower depression scores.

Director of the Parkinson's Disease and Movement Disorders Clinic

Find out how Dr. Grimes got pulled into the field of neurology and what advice he has for people diagnosed with Parkinson’s.

Read our Q&A with Dr. Grimes

“Psychotherapy is an important option for treating depression in Parkinson’s. Healthcare providers should consider recommending it alone or in combination with antidepressants,” says Dr. Grimes.

It’s patients like Chantal that make this type of research possible. “I’m very proud to have the opportunity to be part of the studies I’m involved in. This was a life-changing diagnosis, and if taking part in these studies is what’s going to make a difference, then I’m going keep doing it,” she says.

Dr. Schlossmacher adds that working with patients is a privilege and calls their courage and commitment “humbling”. He refers to Chantal as a source of inspiration and motivation for him and his research team.

Building a new neuroscience centre

The new neuroscience centre, to be located at the new hospital campus on Carling Avenue at Preston Street, will have the potential to be among the best in the world. It will combine cutting-edge research with clinical treatments to accelerate the development of new therapies for conditions such as Parkinson’s, stroke, epilepsy, multiple sclerosis, and more to help patients just like Chantal.

"“There's going be a cure for Parkinson's, maybe not in my lifetime but there will be. I hope that I get to see it and then I can say, I was part of that study.”

— Chantal Theriault

As the research continues to move forward, Chantal will be more than a spectator as she continues to help advance scientific discoveries through her participation and fundraising whenever she can.

As her tremors are controlled today by medication, she’s proud to be a part of the TOH family that’s working towards progress. “There’s going be a cure for Parkinson’s, maybe not in my lifetime but there will be. I hope that I get to see it and then I can say, I was part of that study, or when Dr. Schlossmacher gets the Nobel Prize or something, I can say I know him.”

As she takes a moment to pause, tears fill her eyes, then Chantal continues. “It makes me proud. It makes me very proud to work for this organization.”

Download or steam episode 108 of Pulse Podcast to hear from Chantal Theriault and her journey with early-onset Parkinson’s.

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Categories: Neuro, Neuro, Neuro, Neuro, Neuro, Neuro, Neuro, Neuro, Neuro, Neuro, Parkinson's

Published: March 2025

Imagine the sensation of a sudden, sharp electric shock to your face, intense and unyielding. Now, imagine that happening repeatedly, day after day, without any warning — pain so excruciating it brings you to your knees. This was a daily struggle for Michelle Kupé. After months of testing, she was diagnosed with trigeminal neuralgia, a rare condition that had a debilitating effect on her life. Desperate for relief, she sought help from The Ottawa Hospital’s neurosurgery team, hoping to regain control of her life.

In December 2017, Michelle scheduled an appointment with her dentist to investigate a strange buzzing sensation in her cheek, which she initially thought was a tooth infection or dental problem. After taking x-rays, the dentist found no issues with her teeth, but the sensation persisted, leaving Michelle with the feeling that something wasn’t right.

By the time the new year arrived, Michelle was preparing to set off on a cruise with her girlfriends. However, the persistent buzzing sensation and the overall sense that something wasn’t right led her to return to the dentist’s office. With no clear explanation for the strange sensations, she was prescribed antibiotics to rule out a sinus infection or other potential issues. During her trip, Michelle couldn’t shake a nagging thought. “The entire time I was there, I kept thinking, ‘Something has happened to me… and I’m not well.’ I was deeply aware that my life was taking a different turn. Something was wrong.”

Trigeminal neuralgia’s excruciating progression

As the buzzing sensation and pain intensified, Michelle returned to the dentist for a third time. It was then the dentist suspected the symptoms might suggest a rare condition called trigeminal neuralgia — a condition that causes severe, electric-shock-like pain on one side of the face. The dentist advised her to make an appointment with her family doctor and see a neurologist as soon as possible.

“It went from this buzzing sensation in my face to feeling like I was being electrocuted. It felt like I was being stabbed, like an electric current was running through my face.”

— Michelle Kupé

As she waited to see a neurologist, the symptoms worsened. “It went from this buzzing sensation in my face to feeling like I was being electrocuted. It felt like I was being stabbed, like an electric current was running through my face.”

As each attack eased, Michelle was terrified to touch or move any muscle in her face, fearing the pain would return. Eventually, she saw a neurologist, who confirmed that she had trigeminal neuralgia. But while one mystery was solved, another emerged. There are three potential causes for this condition: multiple sclerosis, a brain tumor, or vascular compression.

All about trigeminal neuralgia

Trigeminal neuralgia is a rare and exceedingly painful chronic pain disorder that involves the trigeminal nerve on the side of the face. The nerve runs from the top of the ear and then splits into three branches that run to the eye, the cheek, and the jaw.

Learn more

As Michelle waited for an MRI, she continued to run her successful real estate business and care for her five children. Her condition remained stable with medication into the spring of 2018, with occasional, painful flare-ups. But, as time progressed, things started to deteriorate quickly, with attacks becoming more frequent and debilitating. Eating, brushing teeth, and even smiling were becoming unbearable.

“I remember thinking, I don’t think I’m going to be able to go on. Something as simple as a light breeze could cause an attack,” she recalls. “With thoughts of another winter approaching, my husband and I talked about moving somewhere warm because I couldn’t imagine a cold wind hitting my face.”

Debilitating shocks to Michelle’s body

MRI results eventually revealed her condition was the result of a vascular compression and she was referred to Dr. Adam Sachs, current Division Head of Neurosurgery at The Ottawa Hospital.

Dr. Sachs and his team see patients for a wide variety of facial pain, but he says trigeminal neuralgia can be one of the worst. It affects the trigeminal nerves, which carry signals from the face to the brain, and causes intense pain like an electric shock on one side of the face. “The MRI showed that a vessel loop of an artery that goes to the brain stem and cerebellum was compressing the trigeminal nerve — that was the cause of the pain,” he explains.

Director of Neuromodulation and Functional Neurosurgery and Scientist at The Ottawa Hospital

Find out how Dr. Sachs thinks brains are like computers, what he loves about The Ottawa Hospital, and why you might find him fighting a co-worker on his break.

Read our Q&A with Dr. Sachs

“It feels like a high voltage electrical shock running through your face or some people describe it as a dagger being jammed into their face.”

— Dr. Adam Sachs

For patients, like Michelle, the condition can be unbearable. “It feels like a high voltage electrical shock running through your face, or some people describe it as a dagger being jammed into their face,” explains Dr. Sachs. “People are using those terms not to be colourful, but because that’s the closest thing they can come up with, and we hear these terms again and again.”

Modern microsurgical technique with the help of Teflon

While surgical treatment has been available for decades, recent advances have provided new treatment options — modern microsurgical techniques that are more effective and safer. As Dr. Sachs explains, the tools they have today are state-of-the-art.

When it comes time for surgery, it’s an intricate procedure with the patient’s head turned because the surgical team must access a small space at the back of the head called the cerebellopontine angle or CP angle. “That’s where we see all the nerves and the arteries that go to very critical structures of the brain stem. It’s close to the facial nerve, and if damaged, it results in facial palsy.”

In Michelle’s case, the artery had a large vein wrapped around the nerve, and so Dr. Sachs called in his colleague Dr. John Sinclair to assist with the surgery because of the complexity.

“We decided even though it was a large vein, to carefully dissect it off the nerve in addition to the artery. Then we put little Teflon pads under both the vein and the artery to keep them away from the trigeminal nerve,” says Dr. Sachs.

The Teflon creates a physical barrier that will keep the vein and the artery from the nerve, but also keep the blood flowing through them, so they will continue to function.

“We tear it up to microscopic pieces of the Teflon, shaped like cigars, and it creates a barrier because it stays — it’s not going to absorb into the body,” explains Dr. Sachs.

For the most complex parts of the procedure, the neurosurgical team uses high-magnification microscopes and microscopic knives.

Pain is an invisible disease

When it comes to cases of trigeminal neuralgia, our hospital sees patients from across Eastern Ontario. According to Dr. Sachs, not all cases are debilitating like Michelle’s, but for many, the pain they are experiencing is made worse by the fact that those around them don’t always understand what the patient is going through.

"She wasn't even able to smile or laugh for a year. Every time she would smile, she’d have these attacks and pain. So, treating pain is rewarding as a physician because we're able to help relieve it, and that can be transformative for the patient.”

— Dr. Adam Sachs

“Michelle is a very personable individual. She loves to be around family, friends and to laugh and enjoy life. She wasn’t even able to smile or laugh for a year. Every time she would smile, she’d have these attacks and pain,” explains Dr. Sachs. “So, treating pain is rewarding as a physician because we’re able to help relieve it, and that can be transformative for the patient.”

“I remember waking up from surgery and knowing immediately that I didn’t have electricity running through my face. The relief was immediate,” says Michelle.

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The scar from Michelle’s surgery

"The relief was immediate."

— Michelle Kupé

The gratitude she feels runs deep, not only for those who helped take away the agonizing pain, but also for the nursing staff in the neuro ICU — she can’t remember all their names, but she will never forget their compassion.

“This one particular nurse was so kind. I remember slowly waking up after the surgery with him rubbing my arm and saying, ‘You’ve had a rough day today, but you did great,’” she says. “I felt encompassed by caring people who had my best interests at heart. I never for a moment felt abandoned when I was at my most vulnerable.”

Regaining her life back

After five days in the hospital following her surgery, Michelle returned home to her five children and husband Rob. Within five months, she was able to return to work, but continued with physiotherapy for about a year. Today, she can experience bad headaches and is still seen by the pain clinic, but she’s living a full life again — now as an empty nester with her kids grown up and exploring the world.

Michelle reflects on a full circle moment from many years ago when her parents first heard about Dr. Sinclair returning from the United States to his hometown of Ottawa and his efforts to bring a CyberKnife radiosurgery robot to our hospital.

“My parents heard about this CyberKnife and they rallied to support his efforts. Who would have known that years later the neurology department would be where their daughter would end up? We had no other connection really with neurology at the time, and yet this emerging neurosurgery tool was something my parents were really passionate about making sure people had access to.”

It’s a perfect example of the impact of philanthropy and never knowing who it will benefit.

“We believe things don’t happen by accident. The way it lined up and how it all unfolded was part of the plan for my life and shows it’s important to keep giving back.”

Listen to Dr. Adam Sachs talk about the role vital role of the neurosurgical team at The Ottawa Hospital.

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Categories: Technology

Published: September 2024

As the 100th anniversary of the Civic Campus inches closer — marking a century of care and medical breakthroughs — plans continue for the next 100 years of healthcare in our region. The final designs of the new hospital campus will come together in the next year. During this design phase, patients, leaders and staff at The Ottawa Hospital, Indigenous partners, and members of the community are all helping to refine the details of this new state-of-the-art health and research facility.

And while designs are finalized for the new hospital, construction of the parking garage to support the new campus is well underway.

Building a new hospital is a once-in-a-lifetime opportunity and it’s an opportunity that has business leaders, families, foundations, and many other community members stepping forward to support the $500-million Campaign to Create Tomorrow, which has raised an incredible $336-million to date in the region’s largest fundraising initiative.

Designing state-of-the-art operating rooms

The new campus will increase The Ottawa Hospital’s number of operating rooms (ORs) to help meet projected volume increases for surgeries in the future. These state-of-the-art ORs will be where some of the most life-changing care is delivered. 

“It will enhance the patient experience and work efficiencies."

– Lisa Young

According to Lisa Young, Senior Planning Project Manager at The Ottawa Hospital, the functionality of that space will be key to accommodating not only more procedures, but also new equipment and technology. “It will enhance the patient experience and work efficiencies. We’re also focusing on the function of what the teams providing care do within these spaces, rather than the physical form of the building.”

Optimizing workflow in and around the ORs

Enhancements will include a bay of ‘block rooms’ where pre-surgery preparation can take place outside the main OR itself. These rooms can be used for patients receiving regional anesthesia before entering for surgery, helping reduce potential delays, and making the best use of time in the OR for both patients and care teams.

Dr. Sundaresan, Head of the Department of Surgery, and a clinical thoracic surgeon, explains that location of the ORs is vital for optimizing workflow, especially during critical moments. “The ORs at the new campus will be located next to the interventional radiology suites, which is exciting,” he says.

“When the new campus opens, we’ll have one of the most state-of-the-art surgical facilities in Canada, if not North America.”

– Dr. Sudhir Sundaresan

Interventional radiology is a medical specialty that performs minimally invasive treatments using x-ray imaging to guide small instruments, like catheters, through blood vessels and organs to treat a variety of diseases. “In the event there’s a complication during that procedure, sometimes the patient must go urgently into an OR. Now, the patient won’t have to be moved to another location to access the OR — it will be right there.”

New and emerging technologies will also enhance patient care. “When the new campus opens, we’ll have one of the most state-of-the-art surgical facilities in Canada, if not North America,” says Dr. Sundaresan. “Taking advantage of technology that will help us take surgery to the next level is one of the most exciting areas for development in the future.”

New neurosurgery rooms will come with innovative technology

Teams are also exploring innovative technologies such as an intraoperative MRI machine that captures real-time images of the brain during surgery.

Built on a rail system in the ceiling and considered a gold standard for procedures like brain tumor surgery, this MRI machine would be housed within the operating theatre, but just outside the operating room itself. If a patient needs imaging during a procedure, a door is opened, and the MRI can slide in on rails without having to relocate the patient with minimal disruption.

One of the goals in current design plans is for all ORs to have full audio video (AV) integration to help accommodate minimally invasive surgeries and for teaching purposes.

“Having AV integration in each suite provides more flexibility for patients,” Lisa explains. “We currently have specific rooms at each campus that can accommodate this, but having monitors and the ability to connect cameras in all of the ORs will be a new baseline of care that we could provide at the new campus.”

Digital solutions for a proactive approach to care

There are plenty of opportunities for technology to make a positive impact on patient care and experience.

“We’re striving to build on the digital experiences that people have in other areas of their lives to enhance the healthcare services we provide.”

– Glen Kearns

“We’re striving to build on the digital experiences that people have in other areas of their lives to enhance the healthcare services we provide,” says Glen Kearns, Executive Vice President and Chief Information Officer at The Ottawa Hospital. “Whether it’s inpatient care, preparing a patient before they even visit the hospital or following up with them at home, technology can offer solutions and more seamless care.”

Our hospital is also exploring the possibility of remote or virtual admissions to better support seamless inpatient and at-home care. The goal is to launch at the current campuses in advance, so it’s operationally ready on day one at the new campus.

“We want to leverage technology to reduce in-hospital admissions, wait times, and improve how patients interact with our teams.”

– Mathieu LeBreton

“We want to leverage technology to reduce in-hospital admissions, wait times, and improve how patients interact with our teams,” says Mathieu LeBreton, Senior Project Manager and Digital Experience Lead. “Ideally, we’ll have technology that enables and enhances workflow and reduces workflow burden on staff to improve their day-to-day experience.”

Mathieu adds that technology will be integrated to improve the experience of patients who are admitted. All rooms will be single patient and will have digital access so patients can stay connected with care providers and loved ones and access their health information, appointments, and entertainment. Throughout the new campus, technology can also help patients and visitors navigate the hospital.

The role of AI

In recent years, artificial intelligence (AI) has made great strides in becoming a useful and adaptable tool in the workplace. Our Digital Solutions team is already looking at innovative ways to harness the power of AI.

The Ottawa Hospital recently announced a trial of Dragon Ambient eXperience (DAX) Copilot which uses ambient, conversational, and generative AI to create draft clinical notes during patient appointments. With patient consent, it securely records and creates medical notes for the physician to review and approve. The Ottawa Hospital is the first in Canada to trial this innovative solution aimed at reducing physician burnout and time spent on administrative tasks and allowing physicians to spend more time interacting with patients providing care.

A hub for biotherapeutics research

The Ottawa Hospital is already a global research powerhouse, and the new campus will help take our research to unprecedented heights.

The expansion of the Biotherapeutics Manufacturing Centre (BMC) at the new campus will boost our capacity to develop and manufacture lifesaving biotherapeutics, including vaccines, gene therapies, and cell therapies right here in Ottawa.

Over the last 15 years, researchers at our hospital have led more than 20 world-first clinical trials using biotherapeutics such as stem cells, cancer-fighting viruses, and cellular immunotherapy. These trials are possible because the BMC is a specialized clean-room facility that develops and manufactures novel therapeutic products incorporating cells, genes, viruses, and other biological materials.

The BMC is the most experienced and successful facility of its kind in Canada, with more than 40 full-time staff currently based at the General Campus. It consistently operates at full capacity and is booked far in advance with both academic and industry clients — making this expansion vitally needed to further push the boundaries of research and bring more treatment options to patients.

Looking ahead to the next century of healthcare in Ottawa

When the Civic Campus first opened 100 years ago, the world had just emerged from a pandemic and the new hospital was considered the most modern in North America. Now, we find history repeating itself. We are witnessing the community rally together behind a historic campaign that will take research to the next level and help support the most modern and cutting-edge hospital campus in the country. This will transform the patient experience for generations to come, and we invite you to join us.

Together, we are creating tomorrow for generations to come.

Categories: Biotherapeutics, New Campus Development, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Patient Care, Strengthening Critical Services, Technology, Trauma

Published: June 2023

When someone suffers a stroke, the results can be devastating, from severe debilitation to death. An intracerebral hemorrhage (ICH) stroke, more commonly known as a bleeding stroke, is the most serious form of this disease. However, after decades with little in the way of treatment advancements, a global research trial being led in Canada by The Ottawa Hospital could mean an effective treatment is finally on the horizon.

The Ottawa Hospital is recognized worldwide for its expertise in neuroscience, and we’ve made significant strides in addressing today’s most pressing challenges in this area of medicine — including our international, groundbreaking work in stroke. In fact, we are leading the way in how stroke care is delivered in Canada.

World-leading research

Intracerebral hemorrhage is the most lethal and disabling type of stroke, but researchers at our hospital are leading the Canadian site of a promising research trial that could change the way we treat these bleeding strokes.

“The ICH stroke makes up roughly a quarter of strokes. It’s more common as people's ages go up. In Canada, we have an aging population, so we're seeing more and more cerebral hemorrhage.”

— Dr. Dar Dowlatshahi

Dr. Dar Dowlatshahi is a stroke neurologist and senior scientist in the neuroscience program at our hospital. He is leading the Canadian site of the research trial and hopes it will change the way we treat the deadliest and least treatable form of stroke. “The ICH stroke makes up roughly a quarter of strokes. It’s more common as people age. In Canada, we have an aging population, so we’re seeing more and more cerebral hemorrhage,” explains Dr. Dowlatshahi.

All about stroke

Stroke is a disease that occurs within the arteries — also called blood vessels — that are connected to and within the brain. These arteries carry vital nutrients and oxygen to the brain. A stroke occurs when one of these arteries is either blocked by a clot or bursts, preventing the oxygen and nutrients from reaching the brain and causing the artery and brain cells to die.

Learn More

When a stroke code is called

The first thing to happen when someone experiences a stroke is they lose an ability ─ and it happens fast. This is the case whether it’s an ischemic stroke (blood clot) or a bleeding stroke. “For example, they’ll suddenly not be able to move an arm or leg, you’ll see their face droop, or they’ll lose the ability to speak. They may lose vision, or they may also collapse to the floor,” explains Dr. Dowlatshahi.

“For any type of stroke, we use the acronym FAST. If you suddenly see a person’s face get droopy, that’s the F. Ask them to lift their arm, and if they can’t, that’s the A, if their speech changes, that’s the S, and the T in FAST is for time. If you see these symptoms, you need to call 911 immediately.”

How can you check if someone is having a stroke?

If you suspect someone is having a stroke, experts recommend using the F.A.S.T. method.

Face: Ask them to smile. Look for if one side droops.
Arms: Ask them to raise their arms. Look for if one arm doesn’t lift as high or at all.
Speech: Ask them to speak. Look for if their words are slurred or seem unusual.
Time: If any of these signs appear, call 911 right away, and note when the first sign appeared.

In the Champlain region, which includes Renfrew County, Ottawa, North Lanark, North Grenville, Stormont, Dundas, and Glengarry, as well as Prescott-Russell, the rapid response stroke system is excellent, according to Dr. Dowlatshahi. “When you call 911, they can identify the correct stroke hospital to take the patient to, and they call ahead. In the Champlain region, that hospital would be the Civic Campus of The Ottawa Hospital. Our stroke team knows they’re coming, and we’re ready to receive the individual.”

When it’s a stroke where a blood clot has formed in the vessel, there have been significant advancements in care when the patient arrives at the Emergency Department. Those treatments include new clot-busting medications or pulling the clots out with new technology.

However, when the vessel bursts and bleeds into the brain, it’s a more devastating stroke — one that occurs every five minutes in Canada. About 80% of people who have this type of stroke are permanently disabled, while about 40% don’t survive past the first month.

“And nothing’s been successful in the past 20 years as far as treatment, except for bringing down the blood pressure a little bit. That helps, but not in a major way,” explains Dr. Dowlatshahi. “So, we’ve been working very hard over the last decade here, and with our international colleagues, to come up with an approach to treat this type of stroke.

Global intracerebral hemorrhage stroke research trial may lead to better outcomes

Now, a global research trial being led in Canada by our hospital could result in the first drug treatment for ICH stroke patients.

The trial is called FASTEST, referring to the importance of treating a patient who has a bleeding stroke as fast as possible — in under two hours. “It’s a very aggressive, fast trial, and we give the patient a compound that helps stop the bleeding. This compound is called factor VII,” says Dr. Dowlatshahi.

“When a vessel bursts in the brain, it starts squishing that brain and damaging it, and you must get to it as fast as possible to stop the bleeding.”

— Dr. Dar Dowlatshahi

Factor VII is one of many clotting factors naturally produced by our bodies. As Dr. Dowlatshahi explains, the drug in the trial is a synthesized version of factor VII, and time is crucial. “The reason we want to act fast is, if you can imagine you have a pipe that bursts and you’re getting water everywhere, what you’re trying to do is seal the pipe before all the water comes out and damages everything around it,” he says. “That analogy holds all too true for the brain because it’s a closed compartment. It’s got a skull around it. When a vessel bursts in the brain, it starts squishing that brain and damaging it, and you must get to it as fast as possible to stop the bleeding.”

When a patient with an ICH stroke arrives at The Ottawa Hospital, the trial protocol allows the stroke team to access this new therapy. It’s randomized testing, so neither patients nor the care team know whether the actual drug or the placebo was administered.

In 2021, the trial launched. The Ottawa Hospital was the first centre in Canada and enrolled the first two patients worldwide. “Typically, you would think the U.S. would get the first patient because they’re bigger, they have more centres, but it was actually us — it was here in Canada,” says Dr. Dowlatshahi. To date, six countries are participating in this trial including Canada, the United States, the United Kingdom, Spain, Germany, and Japan.

What are the early indicators?

While the testing is randomized, there are early indicators that give reason to be optimistic about what the results of this trial could mean for stroke patients in the future.

In fact, Dr. Dowlatshahi cites the first patient enrolled was an 80-year-old woman who arrived at the hospital in 2021 suffering from a life-threatening stroke. She was enrolled in the study, and less than a week later, she walked out of the hospital. That’s not something this stroke specialist typically witnesses in this type of patient. “She did amazing to the point that she returned completely back to normal,” he explains. “We also got the second patient in the world — both did spectacularly. We’re now up to six patients in Ottawa.”

“If you are in Ottawa and suffer this type of stroke, you have a 50% chance of getting something that nobody else can get — something that may very well be the future standard of care.”

– Dr. Dar Dowlatshahi

Globally, 172 people have been enrolled in the trial with an eventual target of 860. While this is a randomized, blinded trial with final results still to come, Dr. Dowlatshahi believes this treatment could be a game changer for stroke patients after decades of little in the way of options. And for those living in the Ottawa region, they get access to something few Canadians have at this stage. “If you’re somewhere where this trial is not available, you would go to the emergency department, get your blood pressure lowered, and receive the best of the standard care available,” explains Dr. Dowlatshahi. “However, if you are in Ottawa and suffer this type of stroke, you have a 50% chance of getting something nobody else can get — something that may very well be the future standard of care.”

“This research means a type of stroke that affects one out of four, that is currently the most lethal and the most disabling type of stroke, could become completely treatable.”

– Dr. Dar Dowlatshahi

And while the research teams continue to recruit more patients into the trial, not only here at The Ottawa Hospital, but also at all the other sites around the world, there is optimism that this could be the long-awaited breakthrough for patients who suffer from ICH stroke. “This research means a type of stroke that affects one out of four, that is currently the most lethal and the most disabling type of stroke, could become completely treatable.”

Listen to episode 85 of Pulse Podcast for our conversation with Dr. Dar Dowlatshahi.

Listen Now:

Categories: Clinical Trials, Creating Tomorrow, Creating Tomorrow, Creating Tomorrow, World-Leading Research, World-Leading Research, World-Leading Research, World-Leading Research, World-Leading Research

Published: November 2022

When caring for patients who suffer from a stroke — time is of the essence. In Canada, stroke is the third leading cause of death and disability in adults, but an innovative and ever-evolving stroke treatment, called thrombectomy, used at The Ottawa Hospital, is a game changer. The Ottawa Hospital is recognized worldwide for expertise in neuroscience, and we’ve made significant strides in addressing today’s most pressing challenges in neuroscience — including our international, groundbreaking work in stroke. In fact, we are leading the way in how stroke care is delivered in Canada, including the use of thrombectomy.

Innovation and Technology

The future of healthcare at our new hospital campus will be embedded with technology and innovation that will equip our experts, like Dr. Robert Fahed, with the most sophisticated tools.

Ten years ago, a thrombectomy was an experimental stroke treatment — with life-altering potential. Dr. Robert Fahed was a medical student doing his residency program in neurology at a prestigious hospital in Paris, France, when he was first introduced to this novel procedure. In fact, he vividly recalls the results from the first thrombectomy he witnessed. “A woman in her 50s suffered a massive stroke. Her right side was paralyzed, and she was unable to speak because of the stroke. Unfortunately, she wasn’t a candidate for a drug used to dissolve the clot in the brain,” explains Dr. Fahed. “I thought to myself, this poor woman will be paralyzed for the rest of her life, if she survives.”

That’s when a member of the care team explained they were going to try an experimental treatment called thrombectomy. Dr. Fahed continued with his rounds and 30 minutes later, he received a shocking call. “The patient was moving her right arm. She wasn’t paralyzed anymore. I immediately thought, ‘I don’t know what happened in that room, but I want to be the one doing these interventions. I want to be the one bringing those people back to life. That’s what I want to do.’”

Attracting the best and brightest from around the world

Today, Dr. Fahed is one of only four interventional neuroradiologists and stroke neurologists in Canada. He was recruited to The Ottawa Hospital in 2019 — fulfilling his childhood dream of coming to live in Canada.

His parents immigrated to France from Syria before he and his sister were born, hoping for a better life for their children. Growing up in the suburbs of Paris, Dr. Fahed watched his father, a neurologist, care for patients day in and day out. And so, the field of neurology was a natural path for him to follow. “I’ve always liked neurology. It was pretty clear to me that I wanted to become a doctor. I was seeing my father as my hero. One of my very first electives was in stroke neurology.”

“The Ottawa Hospital is famous for its expertise in stroke. We have a very strong stroke program, and are a high-volume centre where we perform these treatments 150 to 200 times a year.”

— Dr. Robert Fahed

“The Ottawa Hospital is famous for its expertise in stroke. We have a very strong stroke program, and are a high-volume centre where we perform these treatments 150 to 200 times a year.”

— Dr. Robert Fahed

Meet Dr. Fahed

What are the symptoms of a stroke?

Sudden weakness, numbness, or paralysis, especially on one side of the body
Sudden confusion, difficulty speaking or understanding when others are speaking
Sudden trouble seeing — including blurred or double vision — in one or both eyes
Sudden trouble walking, dizziness, or loss of balance
Sudden severe headache with no other explanation

Dr. Fahed did most of his training at the Rothschild Hospital in France, which he describes as one of the centres where interventional neurology was pioneered. But this young physician also had a deep desire to do research, so he completed a master’s degree in Montreal before returning to Paris — but always longed to come back to Canada. “The Ottawa Hospital is known for its great research infrastructure and how much it supports researchers.”

New technology changes the outcome for stroke patients

One-quarter of Canadians living with stroke are under age 65, and the risk of stroke rises rapidly after age 55. Eighty-seven percent of all strokes are ischemic strokes — when a vessel supplying blood to the brain is blocked by a clot.

The late Dr. Cheemun Lum and Dr. Dar Dowlatshahi helped pioneer a technique called endovascular thrombectomy (ET) that saved the lives of numerous stroke patients. The findings from the trial known as ESCAPE were released in 2015. This unique procedure is performed by inserting a thin tube in the groin, where it travels through an artery until it reaches the clot in the brain. With the help of X-ray technology, the clot is then sucked out with the help of a pump, restoring blood flow to the brain.

1
A major blood vessel in the brain is blocked by a blood clot, causing an acute ischemic stroke.

2
A thin catheter inserted into the groin travels through an artery until it reached the clot. A stent passes through the catheter and engages with the clot.

3
The stent is then pulled back taking the clot with it. The goal is to remove the entire clot on the first try to restore blood flow as quickly as possible, limiting damage caused by the stroke. 

4
Blood flow is restored, and brain function can often improve immediately.

“We're aiming to remove the clot completely, on the first try. We call it a home run.”

– Dr. Robert Fahed

While this was a groundbreaking procedure, more work was needed to better perfect it as they could only re-open the blocked artery 50 to 60% of the time. “That clot is not always easy to remove. Sometimes you need to try multiple times. Sometimes you can only remove part of it. If you can only partially reopen the vessel, you only partially restore blood flow, which means that some regions of the brain will be damaged. So, we’re aiming to remove the clot completely, on the first try. We call it a home run,” says Dr. Fahed.

These home runs are becoming increasingly common thanks to new technology — and the results can be lifechanging. A patient can go from being paralyzed and unable to speak to talking and walking within 20 minutes of the procedure.

How can you check if someone is having a stroke?

If you suspect someone is having a stroke, experts recommend using the F.A.S.T. method.

Face: Ask them to smile. Look for if one side droops.
Arms: Ask them to raise their arms. Look for if one arm doesn’t lift as high or at all.
Speech: Ask them to speak. Look for if their words are slurred or seem unusual.
Time: If any of these signs appear, call 911 right away, and note when the first sign appeared.

How we helped refine the technology to provide better outcomes

Recently, a new catheter device developed by a start-up in Kitchener-Waterloo showed promise at removing the clot on the first try. The company reached out to our stroke team for help in testing the effectiveness of the Health Canada approved equipment. “The Ottawa Hospital is famous for its expertise in stroke. We have a very strong stroke program and are a high-volume centre where we perform these treatments 150 to 200 times a year,” says Dr. Fahed.

He adds, “We also have unparalleled scientific expertise in the design of studies to evaluate these tools. Because when you create a tool, you can’t just use it. You need to try it, evaluate it, and see if it’s safe and efficient. So, the company approached me and Dr. Brian Drake to investigate.”

They used 3D-printed silicone models to test this new stroke treatment option using fake clots in 3D-printed blood vessels that mimic a brain. They spent many hours trying different ways to use this catheter. “We wanted to determine the best and most effective way to use it in patients, and we found an approach that was very promising and extremely efficient in the silicone model. Then we designed a study that uses the catheter in stroke patients, and we will compare the results of this trial with trials using different tools and devices,” says Dr. Fahed.

"If the results continue this way, it's a major game changer. It's going to be a huge revolution in this field.”

– Dr. Robert Fahed

Inside the angiosuite at The Ottawa Hospital, Dr. Robert Fahed navigates a catheter through a model of the circulatory system.

This 3D-printed silicone model is used to test this new stroke treatment option. It uses fake clots in 3D-printed blood vessels that mimic a brain.

So far, the results are extremely promising. The success rate of pulling the clot out on the first try — the ‘home run’ — has increased significantly since using this newly devised catheter. “We are now able to pull the clot out completely on the first try in the vast majority of patients. If the results continue this way, it’s a major game changer. It’s going to be a huge revolution in this field.”

Disruptive innovations and treatments thanks to research

“I'm proud to be part of such disruptive innovations and treatments — there is a lot of excitement in our field because the future is even brighter.”

– Dr. Robert Fahed

This treatment could be transformative for stroke patients and their families, and it if it continues to be successful, the benefits will be felt across the country impacting thousands — saving the lives of more people and saving them from disability. “I’m proud to be part of such disruptive innovations and treatments — there is a lot of excitement in our field,” smiles Dr. Fahed.

Research plays a vital role in where we are today and the innovative advancements we’ve seen to date. “Today’s research is tomorrow’s care. What we are studying today will be the cutting-edge, groundbreaking, disruptive treatment that we can offer to our patients tomorrow,” explains Dr. Fahed.

His constant search for new stroke treatment options continues in the research he does today. Dr. Fahed is currently assessing whether algorithms used to determine which people are eligible for thrombectomy may be missing some patients. He’s testing these algorithms to make sure they give the same answers when assessed by different physicians or machines. There’s also research into the type of drugs to give stroke patients when they’re with paramedics, prior to the arrival at the hospital.

Patient Testimonial

Mary Vanstone arrived at the Civic Campus of The Ottawa Hospital on September 27, 2022, after suffering a stroke at her home in Perth, Ontario.

Patient Testimonial

The ischemic stroke had completely paralyzed her left side. Dr. Robert Fahed was in the Interventional Neuroradiology Angio suite that afternoon and performed a thrombectomy on Mary shortly after her arrival.

Patient Testimonial

“They initially didn’t know what the long-term effects would be for me physically and even my brain when I first arrived. But I’m even better than I was before. They said I would likely be in for a week, but the next day, after the procedure, they said I could go home — everything was good! The hospital was fantastic. It was amazing.”

– Mary Vanstone

According to Dr. Fahed, the future is bright, rapidly changing, and improving the lives of more patients. “The pace of evolution and improvement is exponentially higher and better every year. My job is already so different than what it was 10 years ago when I started. And 10 years from now, it will be a completely different field. We will be doing so many more things and doing them so much better.”

It’s a world that continues to fascinate this physician, much like that first thrombectomy he witnessed years ago.

“Today's research is tomorrow's care. What we are studying today will be the cutting-edge, groundbreaking, disruptive treatment that we can offer to our patients tomorrow.”

– Dr. Robert Fahed

Key stroke stats and facts

Ischemic strokes happen when a blood vessel to the brain is obstructed by a blood clot
87% of all strokes are ischemic
A transient ischemic attack, known as a “mini-stroke,” is caused by a temporary clot
Hemorrhagic strokes happen when a weakened blood vessel ruptures
Strokes are the leading cause of disability in adults in Canada
Each year, approximately 50,000 people suffer strokes in Canada
Two thirds of all strokes happen in people over 65
Your risk of a stroke doubles every 10 years after turning 55
Men have a slightly higher risk of stroke than women
Risk factors for a stroke include: a family history, high blood pressure, high cholesterol, drug abuse, a high weight, inactivity, excessive alcohol consumption, smoking, sleep apnea, and diabetes

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

Categories: Innovation and Technology

Published: September 2022

When Geneviève Bétournay reflects on the past decade, she thinks about the adversity she has overcome. As the owner of the Art House, a coffee house/art gallery, she’s endured keeping her business alive during the pandemic. However, an even bigger challenge was her diagnosis of multiple sclerosis (MS) in 2010. Today, thanks to a life-changing stem cell transplant at The Ottawa Hospital, she has a whole new perspective on the possibilities that lie ahead for her.

Find out how the Campaign to Create Tomorrow will take research to unprecendented heights.

Geneviève is no stranger to adapting to change. She was in her early 20s and going to university when she started to have issues with her vision. Especially during stressful times, her vision would become blurry, but she didn’t associate it with anything more serious. That changed when she was 23 and living in Japan — new symptoms emerged. “I had more issues with my vision. It was getting worse and that was scary. Also, my foot would drop — it would drag when I tried to move it and there were other issues related to movement,” recalls Geneviève.

News of MS diagnosis hits hard

When she returned home from Japan, she started to seek answers, but it was some time before anyone would connect the dots and uncover the problem. “Ultimately, it was the vision issues that ended up getting me to see a neurologist because basically, my optometrist was able to get my prescription right, but my vision was still blurred,” explains Geneviève.

It was Geneviève’s neuro-ophthalmologist that first revealed the severity of what she was facing. Early indications suggested her symptoms could be the result of a brain tumour or MS. “I remember that day sitting in the office. I was extremely emotional because I didn’t know what that meant to be honest. When you grow up, in our society as it is, chronic illness is not something that’s talked about all that often.”

An MRI finally provided Geneviève with answers. But along with those answers came the shock of an MS diagnosis.

“What is life with MS? What would life even look like? It just sounded scary. I didn’t know what was going to happen to me.”

– Geneviève Bétournay

MS is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation, and balance. For Geneviève, there were so many unknowns and even more questions. “What is life with MS? What would life even look like? It just sounded scary. I didn’t know what was going to happen to me,” she says.

Effects of MS on the body

Fatigue, cognitive disruption, mood changes
Vision issues such as vision loss, blurred vision, and double vision
Difficulty with speech and swallowing
Incontinence and digestive problems
Difficulty with hand-eye coordination and numbness/tingling in hands
Sexual dysfunction
Loss of power in a limb or numbness
Walking difficulties and balance problems

Groundbreaking MS treatment pioneered in Ottawa

Once Geneviève and her family processed the news of her diagnosis, she learned everything she could about the illness. A family friend, who happens to be a nurse, had heard a lot about Dr. Mark Freedman and his transformational MS stem cell transplant research in collaboration with Dr. Harold Atkins and encouraged Geneviève to get in touch with The Ottawa Hospital’s MS Clinic. Meeting Dr. Freedman was a pivotal day that would shed new light on her future. “I see it as one of those very lucky life-changing moments when I made that call,” explains Geneviève.

Twenty-four years ago, many were skeptical when Drs. Atkins and Freedman first proposed the idea of using stem cells to reprogram the immune system to halt the progression of MS. Today, they are known for pioneering this groundbreaking treatment which is now being used in many countries around the world. In fact, it was serendipity that led Dr. Atkins, a hematologist, and Dr. Freedman, a neurologist, to meet while they were working on a different project. The two started to discuss stem cell transplants and that would ultimately lead to the transformation of MS treatment.

While this was a time of uncertainty for Geneviève, she felt she was in the right hands to handle the complexity of her case. “Dr. Freedman was very kind from the beginning. It was very comforting to know that there were multiple treatment options if something didn’t work.”

Initially, Geneviève received the first line of treatment for a year that included injections every two days; however, it didn’t provide positive results. Next in line was a form of chemotherapy that targeted her immune cells. She remained on that treatment for two years, but once again, the results didn’t have the impact her medical team had hoped for, so, in January 2013, Dr. Freedman recommended the MS stem cell transplant.

MS symptoms were progressing quickly

At this point, Geneviève’s MS was progressing quickly. Both of her eyes were now affected, and increasingly her mobility was impacted. “I felt numbness below the waist. It was very difficult for me to walk unassisted. I would need something to hold on to — either a person or a wall or something like that. There were also issues with muscle spasms and dizziness,” explains Geneviève.

Headaches were also a challenge, and life was becoming more difficult for this young woman who was working on her Master’s degree at UOttawa. Her degree was in organic chemistry, and lab work was challenging because of blind spots in her vision and a lack of dexterity. When it came time to decide whether to participate in the transplant, she explains there was no decision to make. “I knew about this treatment from the beginning. It was always in the back of my mind. I had already processed it. I do remember being sad that nothing else had worked and I had to do this or else my condition would continue to go downhill rapidly. It gave me hope but it was a very emotional day,” recalls Geneviève.

“I felt numbness below the waist. It was very difficult for me to walk unassisted. I would need something to hold on to.”

– Geneviève Bétournay

She remembers the compassionate support she received from Dr. Freedman when it was time to consider the transplant. He explained it would be one of the hardest decisions she’d ever make and encouraged her to take the time to make sure it was right for her.

Geneviève learned that she could become infertile because of the procedure, so in the few months before her transplant, she had some of her eggs harvested and she also received a shot that could allow her eggs to go into “hiding” during the treatment.

Time for the MS stem cell transplant

In July 2013, Geneviève received her stem cell transplant. The process begins with purifying and freezing the patient’s stem cells which will later be “cleaned” in the lab. The next step is a strong chemotherapy treatment to destroy the patient’s immune system. The final step is the transplant of the clean stem cells back into the patient — that’s when a new immune system starts to develop.

It’s not an easy process, but Geneviève was focused on what the result might give her. “Mentally and physically, it was challenging, but to be honest, I’m a different person today because I went through that.”

How did a stem cell transplant halt MS?

Geneviève underwent an immunoablation and autologous hematopoietic stem cell transplantation (IAHST) to treat her MS. It’s a groundbreaking treatment pioneered by researchers at The Ottawa Hospital for patients with certain forms of multiple sclerosis. It involves harvesting and treating a patient’s own stem cells to remove traces of disease, eliminating their immune system, and then creating a new one using their newly “cleaned” stem cells. IAHSCT is currently being used to treat two other rare autoimmune disorders: myasthenia gravis and stiff person syndrome.

Learn more about stem cells.

“Those moments where something happened that I wasn’t able to do before – it’s like pure euphoria. It was joy. It was gratitude for something that you never thought you’d ever feel again.”

– Geneviève Bétournay

Geneviève says she was in the hospital for eight days before she was able to go home because she didn’t have any major infections or require constant monitoring. Also at that point, her cell counts started to go back up — her new immune system was starting to grow. She returned to the hospital as an out-patient for several months.

The next step was to determine the impact the transplant would have on her overall health. It took between eight and 12 months for Geneviève to recover, and then she started to notice tiny improvements. “That’s when I first noticed I could do something that I couldn’t do before, or I had lost the ability to do. The first thing I noticed was I could lift my right leg, because my right side was more affected than the left.”

As Geneviève saw these small improvements begin, she tried to temper her expectations. She didn’t want to let her hopes get too high, but she admits sometimes she couldn’t resist. “Those moments where something happened that I wasn’t able to do before — it was like pure euphoria. It was a joy. It was gratitude for something that I never thought I’d ever feel again.”

Was it all worth it?

Over the past decade, Geneviève has seen every single symptom get better. From lifting a single toe to moving a foot to being able to jump again, and then walking several kilometres without tripping and falling to the ground — these are big milestones on her road to recovery. The signs of MS are disappearing. “To date, it would seem I have not had any new relapses. No new disease activity. My vision improved, and I continue to recover, albeit very slowly as it takes a while to heal.”

When Geneviève reflects on how far she’s come, had she not undergone the stem cell transplant, she believes she would likely be in a wheelchair today. “It was 100% worth it. Just the fact that I can move blows my mind. I have a great deal of gratitude for the doctors and everything the hospital had done for me.”

And today, with only a slight limp, she walks up the steps into the Art House and appreciates each moment she has to celebrate the creative artists in our city and transformational treatment she received at our hospital. “It’s priceless what I have gained. Aside from developing MS, nothing has had a more extensive impact on my life than undergoing this stem cell treatment. Simply put, it saved my life, or perhaps you could say it gave me a second one.”

“It’s priceless what I have gained. Aside from developing MS, nothing has had a more extensive impact on my life than undergoing this stem cell treatment.”

– Geneviève Bétournay

Listen to Geneviève share her journey with MS in episode 66 of Pulse Podcast.

Listen Now:

Categories: Clinical Trials, Creating Tomorrow, Stem Cell, World-Leading Research

Lukas Marshy takes us on his journey of the night he arrived at The Ottawa Hospital in distress and extreme pain. He needed specialized care from our neurosurgery team for a rare condition that resulted in a massive brain hemorrhage. Here is Lukas’ story in his own words.

It was late afternoon on a cold winter January day in 2012 when I was rushed to The Ottawa Hospital. Something was very wrong. That was ten years ago — but it’s a time in my life I will never forget.

I was 16 years old at the time and was playing video games — nothing out of the ordinary for a teenage boy. I remember I reached down to plug in the speaker for my computer and I felt dizzy — the room around me started spinning. I also realized I had a headache, and it was pretty bad.

I went upstairs to let my dad know, and he initially thought I was coming down with something. He gave me some Tylenol for the headache, and I went to lie down in my room. But when I looked up at the ceiling, it was spinning — I couldn’t even look at it. I yelled for my dad.

At that point, I thought I was going to be sick to my stomach, and he said, “Let’s get you down to the bathroom.”

When he was 16 years old, Lukas Marshy was treated for an ateriovenus malformation (AVM) at The Ottawa Hospital.

Red flags raised

Then I realized I couldn’t stand up — that’s when the red flags went up for my dad. He helped me to the bathroom, and I vomited. I remember clutching onto the toilet because it felt like I was being pulled to one side of the room. It felt like in a movie when someone opens the airplane door and everything gets sucked outside. I was holding on to the toilet bowl so tight.

Eventually, out of exhaustion, I passed out and I was lying on the bathroom floor. I could hear my dad’s voice trying to prompt me to go back to my bed, but I couldn’t respond. He finally said, “If you don’t stand up, I’m going to have to call an ambulance.” And I thought to myself, ‘That’s perfect, I’m going to stay down because I need help.’ I just couldn’t say the words.

“I remember clutching on to the toilet because it felt like I was being pulled to one side of the room. It felt like in a movie when someone opens the airplane door and everything gets sucked outside. I was holding on to the toilet bowl so tight.”

– Lukas Marshy

When the paramedics arrived, they asked lots of questions. They were concerned I had overdosed on drugs or had been drinking, but I knew that wasn’t the case. Eventually, I was able to tell them no.

They got me onto the stretcher, and we headed outside. I remember seeing the snow and feeling the cold on my body as they loaded me into the ambulance. They took me straight to CHEO where a CAT scan of my brain indicated a massive hemorrhage. At this point, doctors recommended that I be transferred to The Ottawa Hospital’s Civic Campus for specialized surgery.

Transferred to The Ottawa Hospital after brain hemorrhage diagnosis

While I was in and out of consciousness, and my memory is a bit spotty, I do remember being in extreme pain. I also remember my mom being by my side. When I think back on that night and arriving at the hospital, that was the worst part of the entire journey — the pain in my head was excruciating.

I was diagnosed with Arteriovenous Malformation (AVM). We learned I was born with an abnormal tangled mass of blood vessels in the back of my head. An intricate surgery by a skilled team was required, and as I waited for them to prep for surgery, I was given medication to ease the pain. That’s the first time I started to feel more comfortable — even though brain surgery was looming.

What is a brain AVM?

An arteriovenous malformation —or AVM — is an abnormal tangle of the blood vessels connecting an artery to a vein. An AVM disrupts normal blood flow and deprives the surrounding tissue of oxygen. AVMs can occur anywhere in the body, but when they’re in the brain, they’re more likely to cause long-term effects. About 88% of AVMs go undiagnosed, and once diagnosed, brain AVMs can usually be treated to reduce risks.

Normal blood vessels.

An abnormal tangle of blood vessels.

My dad stayed with me the whole time I was in the hospital — he even slept by my side at night. The team caring for me was kind, but having my dad with me was an added level of comfort.

“It was almost as though a calmness came over me. I wasn’t nervous at all because whatever was happening to my brain at the time was going to get better.”

– Lukas Marshy

Lukas Marshy, shown with his dad, during treatment at The Ottawa Hospital for a brain hemorrhage. — Lukas was treated for a massive brain hemorrhage at The Ottawa Hospital.

When my dad told me I was going to have brain surgery, I reflected on an actual conversation I had with friends a couple years before. We asked each other “What is a type of surgery you’d never want to have?” If you can believe it, I said brain surgery because that seemed the most dangerous.

But when I was actually faced with that reality, I just remember thinking, “No problem.” It was almost as though a calmness came over me. I wasn’t nervous at all because whatever was happening to my brain at the time was going to get better. I also had Dr. John Sinclair in my corner — he’s amazing.

Facing surgery for a brain hemorrhage

By 7 a.m. the next morning, I was ready for surgery.

It was an eight-hour procedure. The hemorrhage was in the cerebellum area of my brain, so the lower left back side of my head. Dr. Sinclair and his team removed most of the clot, which turned out to be pushing against my brain stem. That was scary to learn, but thankfully it didn’t cause any permanent damage. In fact, Dr. Sinclair explained they left a small portion of the clot there, which they cauterized, because they needed the swelling on my brain to come down before they could remove the clot completely.

Neurosurgeon Dr. John Sinclair treated Lukas Marshy for a brain hemorrhage.
Learn more about Dr. John Sinclair.

The surgery was successful, but I wasn’t done yet. I was placed in a medically induced coma for the first few days, and I remained in hospital for two or three weeks before I could go home. That first homemade sandwich I ate when I got home is something I won’t forget. I think it was the best egg salad sandwich I’ve ever eaten! My siblings were all home with me — and my dog — it was so good to be back.

Road to recovery

On February 28, 2012, I returned to The Ottawa Hospital for the second surgery to remove the malformation which had caused the bleeding. During this operation, the remaining clot and AVM were removed from my brain and Dr. Sinclair placed a titanium mesh about the size of a credit card to replace where a piece of my skull had been removed during the first surgery. Once again, I was put in a medically induced coma for three days, and when I woke up my recovery began.

“To this day, my family says Dr. Sinclair not only saved my life, but he made me smarter too!”

– Lukas Marshy

Next up was physiotherapy to help get my strength back. I was determined to get back home for good, so just over a week later when my care team asked me to show them how I managed the stairs, I tackled those steps with determination. I guess my progress was convincing because after that I was cleared to be discharged.

Lukas Marshy during his recovery from a brain hemorrhage. — Lukas during his recovery.

A whole new perspective on life

I had to use a wheelchair for a short period before progressing to a walker, but as a 16-year-old, I was ready to ditch it as soon as possible. I resumed my schoolwork at home for a few weeks until I was strong enough to get back to the classroom. I was finally reunited with my friends and was able to return to my grade 11 classes.

Something important to note, my marks after the surgery were in the 90s. I was thrilled because, you see, in grade 10, my marks weren’t anywhere near that level. In fact, I usually got 60s and some 50s. So, to this day, my family says Dr. Sinclair not only saved my life, but he made me smarter too!

“The Ottawa Hospital gave me a second chance at life.”

– Lukas Marshy

I’ve been great ever since. I haven’t had any long-term mobility or balance issues — I was incredibly lucky. Lucky that my dad took those first symptoms seriously and called for help. Lucky to have the brilliance of neurosurgeon Dr. Sinclair and the other healthcare providers leading my care. And lucky to be living a normal life today, because if the AVM hadn’t been discovered early after the symptoms started, it may have resulted in serious disability or death because of where it was located.

Lukas Marshy, shown on his graduation day, was treated for a brain hemorrhage at The Ottawa Hospital. — Lukas on graduation day.

Today, Lukas Marshy is married with two children.

The Ottawa Hospital gave me a second chance at life. Today, I’m married, have two young children, and I have a great job at Queen’s University in Kingston. That experience ten years ago as a 16-year-old changed my whole perspective on life. If this had not happened to me, I wouldn’t be the person I am today. I’ve been cherishing life ever since.

WATCH: Lukas Marshy reflects on his treatment and shares where he is now, thanks to the skill and dedication of his care team.

Download episode #64 of Pulse Podcast to hear Lukas Marshy’s story.

Categories: Patient Care, Strengthening Critical Services

The Ottawa Hospital has made great strides in addressing today’s most pressing challenges in neuroscience. We are internationally recognized for our groundbreaking research and treatment of many neurological diseases, such as stroke, neuromuscular illnesses, and Parkinson’s disease (PD).

In fact, we are one of very few centres in Canada where neurologists work hand-in-hand with basic scientists to tackle unsolved problems. Our goal is to foster new ideas and expand our range of clinical trials to quickly bring cutting-edge treatments directly to our patients. Some of the discoveries that lead to new interventions have been made here.

Parkinson’s disease is the second most common neurodegenerative disease after Alzheimer’s, affecting over 100,000 Canadians. The disease continues to mystify according to Dr. Michael Schlossmacher, a neurologist and the Bhargava Family Research Chair in Neurodegeneration at The Ottawa Hospital. This Chair is an example of one way philanthropists, like the Bhargava family, actively support the hospital.

“It was in 1961 when one of my teachers in Vienna first discovered the Lazarus-type effect of how dopamine therapy can suppress the symptoms of Parkinson’s. That was six decades ago, and we now understand more of the mechanisms underlying the motoric deficits, but we still don’t have a therapy in place to stop the illness in its tracks,” says Dr. Schlossmacher.

Thinking outside the box for Parkinson’s treatment

Dr. Michael Schlossmacher, The Ottawa Hospital

“If we want to treat Parkinson’s, slow it down or stop it, it will only happen through research that identifies better ways to separate subtypes of the illness and confirm targets to develop drugs for interventions.”
– Dr. Michael Schlossmacher

While progress is slow and often frustrating for patients, active research continues to probe for answers. “If we want to treat Parkinson’s, slow it down or stop it, it will only happen through research that identifies better ways to separate subtypes of the illness and confirm targets to develop drugs for interventions. Then, we’ll need to test them in the clinic and, upon demonstration of safety, apply them to a large body of patients in trials to gauge efficacy,” explains Dr. Schlossmacher. He is quick to point out that our Parkinson’s Research Consortium has made a name for itself in Canada and internationally, both on the clinical side and through basic research. Some of the clinical research activity is directed at improved integration of care delivery that we have already available today.

Philanthropy and grants play a pivotal role in moving research forward. For Dr. Schlossmacher and his team, it often allows them the opportunity to develop ideas that are largely out of the mainstream and represent ‘outside the box’ thinking. “Philanthropy has the potential to transform research activities by amplifying them and supporting talented trainees that can work on creative, new ideas.”

Go behind the scenes with Dr. Schlossmacher in episode 7 of Pulse Podcast.

Does Parkinson’s start in the nose?

Over the years, research has shown more than 80% of people with Parkinson’s disease suffer from a reduced sense of smell — it often occurs years before the onset of typical movement-related symptoms. Understanding those early indicators could help in an early diagnosis for patients.

Read our Q&A with
Dr. Julianna Tomlinson.

Read Now

Recently, a US $9-million grant from the Aligning Science Across Parkinson’s (ASAP) initiative was announced to further explore this idea. The hope is to determine whether scent-processing nerves that connect the inside of the nose to the brain may play a role in the development of the disease. Dr. Schlossmacher is the overall leader of the effort.

Dr. Julianna Tomlinson, the scientific program manager for the international team and co-director of research in the Schlossmacher Lab at our hospital, explains the importance of this study. “For us, this is an incredible opportunity to align efforts around the world, because it brings together scientists previously anchored in the PD field with researchers who heretofore have been working outside the field of Parkinson’s.”

There are eight institutes in five countries collaborating on this global study. It’s a unique opportunity to get answers to questions that scientists here in Ottawa have been asking for quite some time, including what role environmental triggers (other than toxins) play in Parkinson’s disease as they interact with genetics. “Right now, the treatments for Parkinson’s help the symptoms but they do not stop the progression of the disease. If we can identify disease processes at an early stage, then hopefully we will be able to stop or at least slow its progression before it reaches those later stages,” says Dr. Tomlinson.

Go behind the scenes with Dr. Tomlinson in episode 34 of Pulse Podcast.

The Ottawa Hospital leads this international effort

There are five main areas that this interdisciplinary and multinational study is pursuing. Our hospital’s focus is on how the immune system relates to Parkinson’s. Specifically, laboratory models will determine how viruses and bacteria could lead to changes in the body that are linked to pathology that is seen in the diseased human brain. Understanding the function of genes that are linked to Parkinson’s and whether those genes could be functioning in the immune system, rather than just in the brain, will also be explored.

The support of our hospital is instrumental in being able to lead this international effort. “There are so many people who are involved in making this work. It’s a full team effort, including financial officers, publication experts, and colleagues with knowledge in technology transfer,” explains Dr. Tomlinson.

Ultimately, it’s about finding answers for our patients and their family members who are desperately waiting for a breakthrough. As Dr. Schlossmacher explains, that’s why the world will be watching these scientists. “From an innovation and creativity perspective, we are setting the stage as a team as to how complex research avenues could be brought together, where people work collaboratively and constructively. We don’t undermine each other; we really complement each other and enable each other.”

Making the patient connection

For nearly two decades, Kelly McDonald felt there was something physically wrong with her, but even an eventual diagnosis of fibromyalgia in her 30s didn’t provide her with the answers she needed. McDonald, a professional photographer with a sharp eye, always knew something was off. Her stance wasn’t great, she struggled with her posture, and she’d get tired easily. However, solving her health mystery was an ongoing challenge and source of frustration. “You know, people think you’re a hypochondriac,” says Kelly.

It wouldn’t be until 2021, at the age of 52, when Kelly was diagnosed with Parkinson’s disease. In recent years, she started to develop tremors, her handwriting deteriorated, and she increasingly had a hard time getting her foot properly placed in her shoe. It was at that point, Kelly’s husband convinced her to see her doctor. Soon her right side became stiff and at times, she also felt numb. Kelly thought she was having a stroke.

“I consider myself a Parkinson’s warrior. I want to be a warrior. I want to bring more awareness to this disease, and I want people to be diagnosed earlier.”
– Kelly McDonald

Knitting is a passion that Kelly won’t yet
give up.

When Kelly met with a neurologist at The Ottawa Hospital, tests revealed she had Parkinson’s — a diagnosis that she, surprisingly, welcomed. “I was just relieved, because I thought I was going to die from a stroke, like my dad did,” remembers Kelly.

Kelly’s father also had suffered from Parkinson’s. Moreover, soon after her diagnosis, she learned even more about her family history, namely that it also had affected the paternal side of her family. She is being cared for by Dr. David Grimes, the Head of the Division of Neurology at our hospital and an expert in movement disorders. It was Dr. Grimes who asked Kelly whether she would be interested in a study known as the Parkinson’s Progression Markers Initiative (PPMI).

Kelly admits that there were some dark days after her initial diagnosis. But in coming to terms with her new reality, she woke up one morning with a new view on her life. “I decided I have this, let’s do something good. I consider myself a Parkinson’s warrior. I want to be a warrior. I want to bring more awareness to this disease, and I want people to be diagnosed earlier,” explains Kelly.

“A lot of people start to tremor when they’re older, and some people think it’s a disease that only affects older people. But Michael J. Fox was diagnosed when he was 29.”
– Kelly McDonald

She enrolled in the PPMI study to help all those living with a Parkinson’s gene mutation, like her, that don’t realize they have it. It’s not until the shaking begins that the red flag goes up. “A lot of people start to tremor when they’re older and some people think it’s a disease that only affects older people. But Michael J. Fox was diagnosed when he was 29.”

What is PPMI?

PPMI is a landmark study led by The Michael J. Fox Foundation investigating better treatment options and prevention of the disease.

The Ottawa Hospital is one of nearly 50 sites across 12 countries participating in the expansion of the PPMI study. The team at our hospital is recruiting people recently diagnosed with Parkinson’s, who are not yet taking medication to control symptoms, as well as people age 60 and older who do not have Parkinson’s but are living with certain risk factors. Those interested in enrolling at The Ottawa Hospital can find the detailed eligibility criteria and how to contact the study team here. The Ottawa Hospital was the first Canadian study site to recruit participants when the study started to include sites outside the US; the expansion phase of the study means there could be 4,000 participants across all sites by the end of 2023.  

“We are proud to be partnering with The Michael J. Fox Foundation and other PPMI site participants, and we are very grateful to the study’s dedicated volunteers who are helping us to move toward a future of disease prevention and better options for those living with Parkinson’s.” 
– Dr. Tiago Mestre

Dr. Tiago Mestre is the principal investigator at our hospital, and he explains initial discoveries from this global study have already had an impact. “Early findings have revolutionized the understanding of Parkinson’s biology and the design of clinical trials testing potential new treatments, but there is much more to uncover. We are proud to be partnering with The Michael J. Fox Foundation and other PPMI site participants, and we are very grateful to the study’s dedicated volunteers who are helping us to move toward a future of disease prevention and better options for those living with Parkinson’s.”  

Kelly joined the study mid-2021 and she’ll be monitored for 13 years. She says it’s been an amazing experience so far and she’d encourage others to consider joining. “Not only do you gain information about yourself and current information on your condition, but a study like this can help other people in the future. It also seems like Parkinson’s runs in my family. I could learn important information that could help my sister or my niece.” says Kelly.

For now, she’s looking ahead and doesn’t lose focus, whether it’s on her photography or as a warrior combatting Parkinson’s.

How can I support Parkinson’s research at The Ottawa Hospital?

Research is costly and community support is vital to help unleash new discoveries. In 2009, a group of investment advisors came together to create Partners Investing in Parkinson’s Research, more commonly known as PIPR.

Learn More

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

Categories: Innovation and Technology, Innovation and Technology, Parkinson's

A resident of Goose Bay, N.L., most of his life, John Bookalam lives for the outdoors. He loves adventures, including international cycling and skiing in the winter. The retired guidance counsellor cherishes that time even more today, after a harrowing medical diagnosis unexpectedly led him to The Ottawa Hospital for neurosurgery.

It all began in late winter of 2017 when John returned from teaching a ski lesson. He was unloading his gear from his SUV when he hit the back of his head hard on the hatch door. Initially concerned he might have a concussion, John quickly eliminated the possibility thanks to his first-aid training. However, a week later, he followed up with his family doctor and an ultrasound revealed what appeared to be a hematoma, a collection of blood outside a blood vessel, which would normally resolve itself. “But the next week, I had to see my doctor again and the hematoma went from four centimetres on the ultrasound to eight centimetres,” says John.

“I was so nervous. I could hardly think.”
— John Bookalam

John on his last solo cycle in the mountainous north west part of the isle of Majorca before his lifesaving neurosurgery at The Ottawa Hospital. — John on his last solo cycle in the mountainous north west part of the isle of Majorca before his 2017 illness.

The situation turns dire

John’s care team in Goose Bay closely monitored him for many weeks. However, by the end of May, he developed symptoms similar to the flu. “I was burning up. I was on fire and I immediately went to the emergency department of my local hospital. Those symptoms would be a bad omen,” says John.

A CAT scan revealed the hematoma had grown from eight centimetres to 10.6, and the situation was becoming dire. He needed a skilled neurosurgery team to help him — a team that was not available in Newfoundland and Labrador. With roots back in Ontario, he turned to his dear friend, Nadia Marshy, from the Ottawa area for guidance.

Nadia vividly remembers the day she got the call from “Labrador John,” a nickname she gave him through their cycling adventures. She was sitting at her desk when she picked up the phone — John was at his wit’s end. “I knew he’d been hit hard on the head and it had caused a large bump. That was weeks earlier, so I presumed that he was all healed up by now. John proceeded to tell me that not only was the bump much larger, but he was in constant pain,” recalls Nadia.

“She played a vital role in identifying The Ottawa Hospital as an emergency life-line to receive lifesaving surgery.”
— John Bookalam

Calling on our neurosurgery experts for help

Following that call, Nadia was beside herself and she knew her friend was in a medical emergency. “Here I was sitting in my sunny downtown Ottawa office with The Ottawa Hospital and all of its innovation and world-class services next door, and there was my dear friend with this massive, infected lump the size of a grapefruit in desperate need of help and so far away.”

Next, Nadia worked to get John in touch with the neurosurgery department at our hospital — she had witnessed the skill firsthand in 2012 when Dr. John Sinclair performed two lifesaving surgeries on someone close to her. “I gave Labrador John the contact information, and within a few short days, he was on a plane to Ottawa,” explains Nadia.

John, far left, with Nadia, with cycling group. fourth from right — John, far left, and Nadia, fourth from the right.

John credits Nadia for helping save his life. “She played a vital role in identifying The Ottawa Hospital as an emergency life-line to receive lifesaving surgery.”

Once John landed at the Ottawa airport, he went straight to the Civic Campus with all his documents in hand. He met with neurosurgeon Dr. Howard Lesiuk and plastic surgeon Dr. Daniel Peters and handed them his scans to review. They determined the situation was worse than anticipated, and John would need surgery as soon as possible. “I was so nervous. I could hardly think,” recalls John.

A shocking discovery

The surgery would be long and difficult, and it uncovered something far worse than John had ever imagined when he embarked on the trip to Ottawa. Doctors discovered a non-Hodgkin lymphoma tumour on the back right-hand side of his skull and part of his skull was badly infected. While the news was devastating, John recalls the reassuring words that came from Dr. Peters before surgery. “He said I had a strong heart and tremendous lungs, and both would help me during the complicated surgery.”

“We are blessed to have some of the best minds and the most skillful surgeons on the planet right in our backyard. I am convinced what they did for Labrador John is what no one else could have done, and ultimately saved his life.”
— Nadia Marshy

While the news was devastating, Nadia recalls after the surgery, the pain John had experienced for so many weeks was already subsiding. “He received incredible care. The night before his surgery, he was weak, in agony, and couldn’t hold his head up for any length of time because of the pain and the weight of the mass on his head. The next day, he was able to lie on his head and rest in comfort,” says Nadia.

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Next, John was transferred to the Cancer Centre at the General Campus for testing to learn more about the tumour. “I underwent a lengthy procedure by an incredible team to diagnose my lymphoma type.”

Primary central nervous system lymphoma

Diagnosed with primary central nervous system lymphoma (PCNSL), John began chemotherapy treatment here in Ottawa before returning home where he would continue his care at the St. John’s Cancer Centre.

Primary central nervous system lymphoma is an uncommon form of non-Hodgkin lymphoma. It starts in the brain or spinal cord, in the membranes that cover and protect the brain and spinal cord, or in the eyes. This type of cancer is more common in older adults with the average age at diagnosis being 65.

Further testing revealed John had diffuse large B-cell lymphoma – BB Expressor — an aggressive type of lymphoma.

However, after months of treatment, good news came on February 26, 2018, when John learned he was cancer free.

“After almost four years, I’m cancer free and I’ve healed after three head surgeries. I’ve resumed my cross-country skiing and marathon road cycling.”
— John Bookalam

Not yet out of the woods

His journey, though, was far from over. John returned to Ottawa for one more surgery for skull base osteomyelitis — an invasive infection. Other treatments back home didn’t prove helpful and, once again, John required specialized care.

A highly skilled team at The Ottawa Hospital came together again to perform another difficult surgery. They would use a procedure called debridement and they would need to produce a new blood supply to the area. Debridement is when the surgeon removes as much of the diseased bone as possible and takes a small part of the surrounding healthy bone to ensure they have removed all infected areas. “They scraped the bone down until there was no sign of the infection and then did skin grafting on the back of my head,” explains John. The second part of the procedure was even more complex and involved taking an artery from his back, transplanting it to his head — creating a vital blood supply from his ears to the back of his skull. “I thank plastic surgeon, Dr. Sarah Shiga for being there in my time of need. If it were not for team Shiga and Lesiuk, I would never have achieved the quality of life I have today.”

“I owe much gratitude to the surgeons and staff at The Ottawa Hospital. Hopefully, my story will inspire others to donate so others can regain a quality of life as I have in abundance today.”
— John Bookalam

As a result of the debridement, he lost a significant amount of bone at the rear of his skull. Today, he must be very careful — he wears a helmet even when he’s driving to protect his brain, but his adventures continue. John’s grateful for each day and each outing he’s able to plan. “After almost four years, I’m cancer free and I’ve healed after three head surgeries. I’ve resumed my cross-country skiing and marathon road cycling.”

Nadia is also grateful for what she witnessed. “We are blessed to have some of the best minds and the most skillful surgeons on the planet right in our backyard. I am convinced what they did for Labrador John is what no one else could have done, and ultimately saved his life.”

Labrador John continues to say thank you

John’s gratitude goes beyond just words. He started by recognizing his care team through our Gratitude Award Program. While it was an important way for him to say thank you, it’s the special note he got in return from Dr. Shiga, who was a part of the second surgery, that made the donation extra special. “She wrote me a beautiful, personal handwritten letter. That’s one of the best letters ever sent to me,” says John.

The 73-year-old didn’t stop there though. He became a member of the hospital’s President’s Council when he committed to support our hospital with a donation of $1,000 a year. “I owe much gratitude to the surgeons and staff at The Ottawa Hospital. Hopefully, my story will inspire others to donate so others can regain a quality of life as I have in abundance today.”

Nadia is just as happy to see her friend back living his active life. “To see Labrador John fully recovered and cycling up challenging hills and covering incredible distances is fantastic. Those surgeons gave him his life back. He never takes a moment for granted,” says Nadia.

And John says he never will. “I will always donate that $1,000 a year to The Ottawa Hospital until I pass from the earth.”

John Bookalam, Summit of San Salvador ,received lifesaving surgery at The Ottawa Hospital after being diagnosed with primary central nervous system lymphoma. — John, Summit at the summit of San Salvador.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

Categories: Cancer, Donors, Gratitude Award

Stefanie Scrivens vividly remembers the first time she experienced a mini-seizure, though she didn’t know what it was at the time. She was only 13 years old, but her symptoms continued undiagnosed for nearly a decade, until a CT scan revealed Stefanie had a brain tumour that would become cancerous if untreated. Her best chance of survival was undergoing two 8-hour awake brain surgeries, performed by neurosurgeon Dr. John Sinclair, and a highly skilled team of experts at our hospital.

Frightening symptoms

Stefanie was in elementary school, walking to class, when she noticed a metallic smell and taste in her mouth, followed by blurred vision. These strange symptoms only lasted a few moments, but afterwards she was disoriented, confused, and struck with a severe headache. “I’m just tired,” Stefanie thought, and went on with her day as if nothing happened. But these symptoms continued, up to 20 times a day, for a week straight, every six weeks — a frightening experience for anyone, let alone a teenager.

Stefanie’s parents were concerned and brought her to her family doctor. “I was told they were growing pains. That I was just going through puberty. I thought what I was going through was normal,” said Stefanie. But as her symptoms progressed year after year, she would eventually discover it was anything but normal.

“Dr. Seale didn’t just chalk it up to anxiety or say that I would grow out of it. He was willing and ready to help me figure out what was going on.”
— Stefanie Scrivens

A twist of fate

When Stefanie was 20 years old, new symptoms developed. That’s when she decided to pay a visit to the Emergency Department (ED). She needed to get to the bottom of the symptoms she had experienced for nearly half of her life. This is where she met Dr. Edward Seale, who was one of the attending physicians at the ED.

It was a twist of fate that Stefanie landed in Dr. Seale’s examination room that day. Dr. Seale immediately recognized her symptoms as mini-seizures. “As someone who has epilepsy myself, seizures and the symptoms one may experience while having one, were top of mind for me,” said Dr. Seale. “Although each physician here would have treated her the same way, seizures are a part of my life, so I could relate to what she was going through.”

Stefanie was relieved to finally feel heard. “It felt like for the first time in my life, someone actually understood what I was going through,” said Stefanie. “Dr. Seale didn’t just chalk it up to anxiety or say that I would grow out of it. He was willing and ready to help me figure out what was going on.”

*After experiencing ‘mini-seizures’, Stefanie Scrivens visited the Emergency Department at The Ottawa Hospital.*

Due to the repetitive nature of her symptoms, Dr. Seale thought she may have epilepsy and ordered her a CT scan to investigate further. But the results from her scan turned out to be far worse than Stefanie could have imagined.

A shocking diagnosis

When Stefanie’s results came in, Dr. Lucian Sitwell, a Neurologist at The Ottawa Hospital broke the news. The cause of her mini-seizures was a grade 2 oligodendroglioma, which is a type of slow-growing brain tumour that becomes cancerous. “Until that moment, the thought had never crossed my mind that it could be a brain tumour,” said Stefanie. As she sat there shocked and scared, she cried. At only 20 years old, this news was devastating.

But a few moments later, she made a crucial decision. Stefanie decided to stay strong, positive, and do whatever it took to fight for her life. “I was of course upset, but I thought to myself ‘I have a choice right now. I can either be angry this is happening to me, or, I can try to make the most of it.’ And I decided, worse comes to worse, if I don’t make it, I don’t want to leave this life with a negative mindset.”

Stefanie Scrivens underwent awake surgery for brain cancer at The Ottawa Hospital. — Stefanie Scrivens underwent awake brain surgery at The Ottawa Hospital.

After absorbing the difficult news of her diagnosis and learning what her treatment options were, Stefanie, armed with her “ready to tackle anything” attitude, decided to move forward with treatment, which would include a complex, 8-hour awake brain surgery.

An innovative treatment plan

Stefanie was referred to Dr. John Sinclair, a world-class Neurosurgeon at The Ottawa Hospital, who would be in charge of her treatment plan and surgery to remove the tumour. Dr. Sinclair has been at the forefront of bringing new and innovative treatment options and technology to The Ottawa Hospital, such as the CyberKnife, Advanced Awake brain tumour surgery, and most recently Fluorescence Guided Surgery. This has brought new hope to patients with unique brain tumours, like Stefanie.

“I felt that I could trust putting my life in his hands.”
— Stefanie Scrivens

Dr. John Sinclair, a neurosurgeon at The Ottawa Hospital.

“Stefanie’s case was rare,” said Dr. Sinclair. “It isn’t very often that you see healthy, young individuals, like Stefanie, with a diagnosis like this.” Fortunately, global advances in cancer research at the time indicated a new treatment plan for tumours such as oligodendroglioma was showing promising results. And Stefanie was a good candidate for this new treatment. “Over a decade ago this wasn’t common practice. We would have monitored the tumour and once it started to change we would recommend surgery then radiation and chemotherapy as a form of treatment,” explained Dr. Sinclair. “Now, we’re seeing a significant increase in life span and survival rates, in cases such as Stefanie’s, when we surgically remove the tumour as soon as it’s detected. No longer are we using radiation and chemotherapy as a primary treatment method for this type of tumour.”

After meeting Dr. Sinclair, Stefanie had full confidence in her healthcare team “Going under the knife is really nerve racking. But not only did I hear how great Dr. Sinclair was as a neurosurgeon, I realized after meeting him how great he is as a person, too,” said Stefanie. “He took the time to get to know me and develop a good relationship with my family and me. I felt that I could trust putting my life in his hands.”

Stefanie was fortunate to benefit from having the tumour surgically removed before it turned malignant. And after a successful complex 8-hour awake brain surgery, she was back home recovering just three days later.

Awake brain surgery and brain mapping

Awake brain surgery, used to treat some brain tumours such as Stefanie’s oligodendroglioma, is a type of procedure performed while a patient is alert and communicating normally while in the operating room. Brain tumours are often dangerously close to regions in the brain that control vision, speech, cognition, personality, and movement. By keeping a patient awake during surgery, they can monitor a patient’s brain activity throughout the procedure to ensure they aren’t negatively impacting these important functions. “Tumours are often woven with functional tissue,” explained Dr. Sinclair. “In the last five years we’ve been able to use more advanced brain mapping techniques so that we can more accurately remove the tumour without hurting the patient.”

Dr. John Sinclair removed Stefanie Scrivens’ brain tumour through a successful awake surgery.

Subcortical mapping is a very new technique used in brain mapping surgery — and our experts are some of the first to use it and are leading the way in training others. As an expert in the field, Dr. Sinclair and his team have offered courses to physicians from across the country so that they too can make use of this revolutionary technique that is changing the lives of patients, just like Stefanie.

Back to the operating room

Within three weeks of her awake brain surgery, Stefanie was back in school. Determined to become a doctor herself one day, she didn’t want to miss a semester of pre-med courses. But after a few months, she felt her symptoms were returning. “I was starting to feel really tired and I was getting seizures again,” said Stefanie. Knowing this could be a part of the healing process, Stefanie wasn’t concerned. But when it was time for her checkup, MRI scans showed scar tissue and the possibility that the tumour had returned.

Stefanie Scrivens inside a professional kitchen — For a year straight following her second awake brain surgery, Stefanie baked a cake every day.

Stefanie would need to undergo a second awake surgery to remove more tissue from her brain. But she wasn’t going to let this get in the way of her dreams. “I thought I would have my surgery, take a bit of time off school and then head right back to my studies,” she said. Dr. Sinclair was able to remove both the scar tissue and some areas concerning for tumour progression. By all accounts, the surgery was considered a success. But while in recovery something significant and unexpected had changed for Stefanie. “I woke up thinking all I wanted to do was bake.”

Becoming a Michelin star pastry chef

Stef Scrivens graduated culinary school after second awake brain surgery. — After her second awake brain surgery, Stefanie Scrivens graduated from
Le Cordon Blue Ottawa Culinary Arts in 2012.

For a year straight following her surgery, Stefanie baked a cake every day. “It was so meditative and healing for me,” Stefanie said. She knew medical school was no longer the right path for her. She had new dreams — to become a professional baker.

In 2012, she graduated from Le Cordon Blue Ottawa Culinary Arts Institute and went on to work for some of the top Michelin star restaurants in the world — a career that has been fulfilling on many levels.

When Stefanie decided to undergo treatment, she didn’t anticipate the experience would change the course of her life so dramatically. She credits The Ottawa Hospital for giving her the chance to chase her dreams and explore whatever the future might hold for her. “Thanks to my incredible healthcare team I’ve lived my life to the fullest and I don’t take any day for granted,” said Stefanie. “I’ve been able to check everything off my bucket list and now I’m writing a new one, with even more dreams to chase.”

Hope for the future

At first glance, you would never know Stefanie went through full-day awake brain surgeries — her blonde, curly hair covering any remaining scars she has accrued. She’s a strong woman who hasn’t let any negative circumstance in life get her down.

“With this new treatment method for oligodendroglioma, I can’t say that a cure is impossible.”
— Dr. John Sinclair

Stefanie Scrivens was treated for a rare brain tumour at The Ottawa Hospital.

The innovative treatment, which removed the tumour before it could become cancerous, meant Stefanie has been able to indefinitely postpone both chemotherapy and radiation. Under the care of our experts, Stefanie is feeling better than ever. Her latest scans show there is no sign of recurrence.

“Stefanie is in unchartered territory,” said Dr. Sinclair. “We can’t say for certain if or when the tumour will come back. But, with this new treatment method for oligodendroglioma, I can’t say that a cure is impossible.”

Because of the excellent care Stefanie has received at our hospital, she has decided to continue to live near Ottawa. “My hope is to continue to be looked after by this group of incredible doctors,” Stefanie said. “I feel so fortunate to be in their care.”

Listen to Episode 88 of Pulse Podcast to find out how Stefanie’s doing today and why she’s excited about the new campus development.

The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.

Categories: Cancer

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Transferred to The Ottawa Hospital after brain hemorrhage diagnosis

What is a brain AVM?

Facing surgery for a brain hemorrhage

Road to recovery

A whole new perspective on life

Thinking outside the box for Parkinson’s treatment

Does Parkinson’s start in the nose?

The Ottawa Hospital leads this international effort

Making the patient connection

What is PPMI?

How can I support Parkinson’s research at The Ottawa Hospital?

The situation turns dire

Calling on our neurosurgery experts for help

A shocking discovery

Primary central nervous system lymphoma

Not yet out of the woods

Labrador John continues to say thank you

Frightening symptoms

A twist of fate

A shocking diagnosis

An innovative treatment plan

Awake brain surgery and brain mapping

Back to the operating room

Becoming a Michelin star pastry chef

Hope for the future

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