In 2017, Jeffrey Kotas became the first person in North America to participate in a clinical trial investigating the safety of using focused ultrasound to treat obsessive-compulsive disorder (OCD). We recently sat down with Jeffrey to learn more about living with OCD and how his focused ultrasound treatment at Sunnybrook Health Sciences Centre in Toronto, Canada, has provided relief and transformed his life.
Thanks so much for sharing your story. Please tell us a little bit about yourself.
I had an enjoyable childhood, with friends my own age and a loving family. Looking back, I rarely took the initiative to talk to others, though, and instead usually waited for others to approach me; I know now that this was due to my illness. I often would end up feeling embarrassed about every perceived minor defect in my interactions with peers, my anxiety would spike, and I would feel bombarded with repeated obsessions of my own flaws. But in spite of this, I was relatively content. Additionally, I had a love and curiosity for science and mathematics, and I was always seeking out new knowledge. By my early teens, I knew I wanted to spend my life in the physics or mathematics field, and I began to make plans for earning a PhD – until my OCD became a boulder in my path.
When did your OCD symptoms start?
My symptoms first became noticeable in the seventh grade when I began to experience a great deal of difficulty in handing in my homework assignments. I would worry very much about the physical state of the paper itself (e.g., creases and stains). I also experienced a strong urge to replace my school supplies with new ones more often than necessary.
How did your symptoms impact your life?
My symptoms became more and more pronounced, and I was eventually failing almost every subject in school. It was around that time that I was diagnosed with OCD and began taking medication for it. Initially my response was transformative; within a year I rose to the top of my class, and two years later I was accepted to the University of Toronto to study mathematics and physics with nearly a full scholarship! But then the OCD made a resurgence in full – I would rewrite my assignments literally hundreds of times, for example, developing sores on my fingers and experiencing painful shoulder aches. After two months, I had to withdraw from university.
OCD also strangled every other part of my life. I lost the ability to pursue my interests in traveling, astronomy, hiking, and computer programing because of my concerns of contamination and perfectionism. Even activities as simple as reading a book or playing video games became impossible since any physical contact between me and them would cause unbearable anxiety.
Did you try other treatments?
Yes, over the next several years I tried around 30 medications, all of which either provided no benefit or produced intolerable side effects. I also tried magnetic seizure therapy, ketamine and repetitive transcranial magnetic stimulation of three separate brain regions… none of which worked for me.
When did you first hear about focused ultrasound? What were your initial thoughts?
In August of 2016, I had an appointment with a neuropsychiatrist at Toronto Western Hospital to discuss registering in a study using deep brain stimulation (DBS) to treat severe intractable OCD. I had serious concerns about DBS, however, and was thrilled when the doctor also raised the possibility of focused ultrasound, which he described as a new treatment using precisely targeted beams of sound waves to achieve largely the same results of DBS, but without many of the downsides that had been weighing on me so heavily.
Why did you decide to take part in a clinical trial?
I did some research on my own and became convinced that focused ultrasound was the right option for me. I was also excited at the chance of being on the leading edge of scientific research. Even though there was no certainty that the treatment would be successful for me in particular, ensuring an overall benefit to human knowledge was something I could take pride in.
Describe the focused ultrasound treatment.
The treatment started off pleasantly at first. The process consisted of a helmet being affixed to my head, followed by repeated cycles of vibrations (or “sonications”) for about 45-75 seconds, followed by a 10-minute long cooling phase. At first the pain felt like a moderately severe headache. But for me it soon became excruciating, even though I was receiving high doses of IV pain killers throughout the procedure. The really painful parts were only the last 15-30 seconds of each sonication, adding up in total to only about 10 minutes. NOTE: As one of the first patients, I am willing to bear that pain as a badge of honor that will hopefully spare some of those who follow from having to experience it themselves. But I do hope that this issue can be worked out in time, whether through modifying the technology in some way or by increasing the amount of anesthetic used.
When did you know that the treatment had produced a positive effect?
The first change I noticed was about two days after the procedure while lying in bed at home recovering. In the past, I had always found it extremely distressing when my mother was doing my laundry for me (I would fixate on contamination issues). But this time, as I saw her doing this familiar activity, I did not feel any of the associated anxiety! I noticed this with many other common activities as well, like grocery shopping, which used to be extremely anxiety-inducing for me and then suddenly wasn’t. And while some days my OCD would get worse again, it was never as bad as before the treatment, and as the months went on, I observed steadily reducing anxiety. It’s worth mentioning that I even found that I could now do things that were completely out of the question before, such as sorting through piles of belongings that had been sitting in my room – for over 10 years – because I had been unable touch them due to the fear of contamination. I even found stacks of hundreds of abandoned school work assignments that I had tossed aside years ago because in my mind my writing had looked horribly disfigured; well, after my focused ultrasound treatment I went through every single page looking for those terrible flaws that I thought I had seen, and I couldn’t find a single one!
Were there any after-effects from treatment?
Any after-effects of the treatment were minimal compared to the experience of the treatment itself, and they only lasted a few days. There were feelings of nausea without vomiting and I was unable to walk unassisted, but that went away after the first 24 hours, with only minor fatigue lingering for the rest of the week. Then I was able to return to my normal activities.
Describe how you are doing now.
Because of my improvements from the treatment, I have been able to tolerate going through intense cognitive behavioral therapy, which has completely transformed my life. I also have a large circle of friends who I have built strong connections with, and I have continued to take part-time university courses. While the OCD has been almost completely removed as a burden in my life, I continue to experience chronic depression (though to a much lesser degree), which still limits the amount of responsibilities that I can take on for the time being. I also have been much more physically active and have been getting into progressively better shape after a decade of sedentary living! I have gone from a state of constant suffering to what feels like none at all now, and that has given me the strength to make the changes I need to create a more fulfilling life for myself and the people that I care about.
Tell me what you would like to say to your clinical team at Sunnybrook.
I found the staff to be extremely compassionate all the way through, listening to all my concerns, answering all my questions, and always making me feel like my well-being was their number one priority. I also really enjoyed sharing my ever-building successes with them at each of the follow-up visits as part of the study. This whole process has given me a second chance at life. I feel as if I have been able to go back and right many of the missed opportunities in my life that I thought the OCD had permanently taken from me. I feel extremely fortunate to have been born in a city where this kind of cutting-edge medical research is being done by such dedicated professionals – because if it weren’t for them I don’t think I would be alive.
What are your thoughts about the Foundation in funding trials to advance focused ultrasound for OCD and other conditions?
I am fully in support of making the type of surgery that I received more accessible around the world. It will save lives as I believe it did mine. Despite the pain of the procedure, I don’t regret it for a second nor would I regret it even if the improvements were not as large as they have been. It has completely changed my life and I’m forever grateful.