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Pioneering patient with extreme OCD sees success with new psychosurgery

TORONTO — A pioneering patient with extreme obsessive-compulsive disorder (OCD) is championing a new treatment which uses targeted ultrasound on the brain to treat the condition.

“It saved my life,” Jeffrey Kotas said in an exclusive TV interview with CTV National News.

The 32 year old from Toronto had over time become imprisoned by anxious and repetitive thoughts about perfection and cleanliness.

“Any surface, whether a bit of dirt or sweat got on it I’d feel overwhelmingly guilty, I would feel like I’d damaged the world,” said Kotas.

He dropped out of university because he became worried his textbookswere contaminated and was throwing them out, replacing them weekly.  Writing assignments was torturous because everything had to be perfect.

“I was constantly writing the page over and over. The same page I would write and attempt to write hundreds of times  and so I would be  up all night and I still wasn’t satisfied with the way it was.”

He barely slept and rarely went out on his own

An estimated one in 40  Canadians will display symptoms of obsessive-compulsive disorder in their lifetime — intrusive repetitive thoughts that cause anxiety and stop them from living a normal life. Obsessions can be mild, and are often accompanied by “rituals” that need to be performed, such as obsessive handwashing or repetitive behaviours like checking that doors are locked.

Counselling and medications help some people but there are cases where the condition becomes so severe, the person’s life is in danger.

THE TREATMENT

That’s what happened In Kotas’s case – therapy and more than 30 medications didn’t help, leaving him depressed and suicidal.

“The entire day I would feel just in so much pain. It  felt like it would never stop and I knew that my fears or concerns were irrational but that didn’t help the suffering,” he said.

But things changed when he became the first OCD patient in North America treated with focused ultrasound as part of a 10-person study underway in Toronto and Calgary. 

Doctors at Toronto’s Sunnybrook Health Sciences Centre targeted a small part of the brain thought to trigger the unrelenting worry at the root of many cases of OCD, using ultrasound energy to kill the tissue.

The treatment is not invasive and it’s done while the patient is laying down in an MRI unit, allowing doctors to see images of the brain and provide precise delivery of the ultrasound.

The pilot study is designed to find out if this new treatment is safe – with doctors saying so far, it is. They add there are signs that it works too.

“In some of our patients, at one year when we follow them, there is significant reduction in their anxiety surrounding their OCD,” said Dr. Nir Lipsman, the neurosurgeon at Sunnybook who treated Kotas.

Doctors stress the treatment doesn’t cure obsessive compulsive disorder. But with a patient’s anxiety reduced, they can return to  counselling and treatment.

“We’ve seen quite a number of individuals report really meaningful improvements, given how bad their illness was,” said Dr. Peggy Richter, who heads the Frederick W. Thompson Anxiety Disorders Centre at Sunnybrook.

“I think focused ultrasound for OCD is an exciting option because it gives us a new way to target illness for people with severe disability,” Richter added.

“People who have been suffering for years, if not decades, and who have not responded, this offers them big promise. Not infallible but it helps.”

After the ultrasound treatment, Kotas enrolled in a nine-week intensive residential program at the anxiety disorders centre, where Richter noticed a change.

“Following  the focused ultrasound Jeffrey was now able to sit with disturbing thoughts, and challenge things in a way that wasn’t possible before,” she said.  “After the focused ultrasound he was just different.”

‘FIRST PIECES OF A NORMAL LIFE’

Now, nearly three years since starting the ultrasound treatment, Kotas said his life has changed for the better.

“It gave me the first pieces of a normal life,” Kotas said.

Normal for him means walking his dog, going shopping and no longer obsessively cleaning. He is making plans to return to university full time.

“It felt like it would never stop and I knew that my fears or concerns were irrational but that didn’t help the suffering,” Kotas explained.

“Even though I was very determined to get better, with so many false attempts to get better I did start losing all hope and each time it didn’t work it was so much more painful.This has been extremely important to me.”

Psychosurgery has been used to treat OCD since the 1960s, when doctorsphysically removed part of the brain during surgery. There were significant risks involved.

Some patients experienced permanent complications including paralysis on one side of the body and cognitive impairment.

Focused ultrasound is non-invasive with fewer complications. But doctors stress it is a last ditch option only for patients who have failed everything else.

Kotas told CTV News he wasn’t scared to be the first person to receive this new treatment.

“Because I studied science and math in university I had always hoped to be on the cutting edge of scientific research, this had just fallen into my lap and I felt it was my purpose,” he said.

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