‘I feel like I have my life again’: Canadian woman describes her freedom from a life controlled by OCD

For those with obsessive-compulsive disorder, life is filled with rituals. Rima Youssef’s began when she was six years old and had to pick up any piece of paper or wrapper she saw on the street – if she didn’t, she feared something awful might happen.

Early counselling helped, but by 19, she says thoughts were back at a higher intensity. She had trouble touching door handles, and even her meals.

“If I touch this food, my family will get sick, and they might die or something will happen to them and that it’s going to be my fault,” she thought.

Showers, she says, took hours. At one point, she turned to disinfectant wipes used to clean counters and appliances to clean her face of imaginary mucus and viruses.

“It didn’t matter how often or how long I washed my hands, it wasn’t good enough….there was a point in time where I’ve probably spent any time I was awake, taking part in some kind of compulsion” She told CTV News.

She says she spent 18 months in a small bedroom in her parents’ basement in Toronto, cleaning herself and her surroundings and taking medications that left her sleepy.

“I didn’t feel safe in my own brain. I couldn’t hug my family. I couldn’t go to work. I couldn’t go to school,” she says.

What set her on the path to freedom, she says, was a novel treatment — a form of brain surgery — to shut down the overactive thoughts and compulsions using focused ultrasound.

“It’s black and white. I feel like I have my life again,” she says, adding she wants to help others trapped by OCD to get the therapy.

OCD in Canada

An estimated 400,000 Canadians are diagnosed with obsessive-compulsive disorder. They suffer with unwanted and disturbing thoughts, images or obsessions that cause anxiety. Repetitive behaviours are used to try to soothe the distress.

The majority of cases can be treated with medication, along with cognitive behavioural therapy (CBT) or exposure and response prevention (ERP) that helps train the person to challenge irrational fears. But some estimates suggest a third of OCD patients, like Youssef, find no relief with those approaches.

So, she became one of about 30 people treated with MRI-guided focused ultrasound.

The technology is approved in Canada and the U.S. for use in those with essential tremors, but this was the North American trial of focused ultrasound in people with OCD.

The dysfunction behind the condition is linked to two small parts of the brain that connect regions important that help to regulate anxiety and mood.

“Here, in the band of white,” says neurosurgeon Nir Lipsman, as he points out two small regions of Rima’s brain scans, “The signal passing through that ‘wire’ is hyperactive.”

Decades ago, doctors discovered that shutting down those regions by burning or cutting them interrupted the rapid flow of thoughts in those with OCD. It was done with invasive surgeries that carried a risk of strokes, bleeding, infections and even early death.

A team at Sunnybrook Health Sciences began studying a new approach using focused ultrasound beams to penetrate the skull and heat tiny regions of the brain, destroying those two small regions. There are no incisions. MRI scans guide the doctors to position the beams to the precise areas to be targeted.

The patient remains awake for the two hour procedure and many leave the hospital the same day, not like the extensive hospital stay with open brain surgery.

Rima Youssef’s experience

Youssef was assessed and cleared to have the procedure in 2022.

It began with Lipsman shaving the then-24-year-old’s hair so she could wear a special helmet that would hold her head steady for the two to three hours she needed to stay still for the MRI.

After doctors mapped the location they needed to treat in her brain, ultrasound beams were directed first at one spot, then at the other.

The only physical marker of the focused ultrasound therapy that remain are two circular, eight-millimetre spots visible on Rima’s post-treatment brain scan.

Research shows it can take several weeks for patients to see changes as the brain rewires itself.

Three months later, Youssef went to open a door and found herself questioning her need to protect her hand from potential germs.

“I would grab the handle with my sleeve… and this time, there was a second of ‘why are you doing that?'”

Two years later, she says those obsessive thoughts about contamination are mostly gone.

She works full-time in the mental health care field, moved out of her parents’ home and says she has no problem touching door handles or her food.

“Things are so different and there’s so many opportunities … I know that I’ll get triggered and that’s okay. But my brain is different,” says Youssef.

She says her OCD is not gone, but under control.

“I go to my therapy, but it has reduced the intensity of the thoughts. Now the thoughts come in, but they are quieter,” she added.

“She’s an incredible success story. She was incredibly motivated,” says Lipsman.

Of the 30 patients with treatment-resistant OCD that were given focused ultrasound therapy, Lipsman says 50 to 60 per cent have “significant results.” The study, he says, has been submitted for publication and he feels confident the therapy should be offered to more people with treatment-resistant OCD.

“We’ve seen patients go from essentially being housebound individuals who had to quit school and to quit their jobs, have lost their families as a result of their severe anxiety. And a year or two years after the procedure, they’re back at school, they’re back at work,” he says.

According to the research, there has been no impact on concentration, memory and communication. Lipsman says there have been minimal side effect, such as small headaches.

“You always want to have access to as many tools as possible,” says Dr. Gail Beck, a psychiatrist at the Royal Mental Health Centre in Ottawa, who has referred one patient with severe OCD to the Toronto clinic.

“Like any very serious illness, it’s not just the person themselves who’s affected. It’s also the care providers and family. So anything that gives them (relief) is very important,” says Beck.

There’s a six month wait list as the Sunnybrook clinic treats about one severe OCD patient a month, using philanthropic donations, research grants and hospital support. Based on the results, the team applied to Ontario Health to have it funded for wider use. It would be one of the first jurisdiction in the world to do that.

“From our perspective, we’re ready to use this in as many patients with treatment-resistant OCD that we can potentially offer this to,” says Lipsman.

Doctors want more availability, report recommends against

A review by provincial officials released in April dashed those hopes, finding there was not enough evidence to merit public funding.

Based on guidance from the Ontario Health Technology Advisory Committee, the Ontario Health report recommended “against publicly funding magnetic resonance-guided focused ultrasound neurosurgery for people with treatment-refractory obsessive-compulsive disorder.”

The panel wrote that while there may be benefits, the “body of evidence is limited” and includes “a small number of cases.”

The recommendation surprised Beck.

“It’s fair enough for people to look and say 30 patients is not a big sample, but if it does help, and they have the information from the data they’ve collected on who specifically has been assisted, then you can scale that research,” she says.

Calgary researchers have started a similar program for severe OCD.

Beck notes that another potential treatment for OCD, transcranial magnetic stimulation which sends signals into the brain using a handheld wand to override the hyperactive thoughts, is also still not approved for public funding in Ontario and other provinces, despite multiple studies showing its benefits.

Beck reflects on the perceptions surrounding psychiatric disorders.

“We can do all kinds of fancy things when it comes to heart disease … but mental illness still carries a stigma and the treatments related to mental illness are still often questioned,” she says.

Ontario Health conducted a public consultation on its report and will make its final decision later this summer.

Youssef talks to others struggling with the paralysis of OCD who can’t find relief in standard treatments. She’s an advocate for focused ultrasound therapy, using her newfound mental health as her platform.

“Working in a field where you’re around folks and you see the toll that OCD takes, I think this could be life changing for a lot of people considering the risks versus benefits.”