How brain pacemakers
are giving
patients their
lives back

Imagine waking up every day in fear of accidentally harming someone you love. Or feeling so covered in germs that you wash your hands over and over until the skin breaks.

This is the reality for many Australians living with severe Obsessive-Compulsive Disorder (OCD).

For a group of nine particular Australians, this psychiatric illness had robbed them of their ability to lead normal healthy lives. It had rendered them unable to work or have meaningful relationships.

But that all changed when they took part in an Australian-first trial, led by Queensland Brain Institute (QBI) neurologist Professor Peter Silburn and QBI Director Professor Pankaj Sah.

The study also involved neurosurgeon and QBI researcher Associate Professor Terry Coyne, as well as Clinical Research Fellow and psychiatrist Dr Philip Mosley, from the UQ Faculty of Medicine and QIMR Berghofer Medical Research Institute.

The trial worked by placing probes into targeted areas of the brain.

The patients were awake during the surgery, given tasks and shown pictures which triggered them, so the surgeons knew they were in the right area. The probes were then attached to a pacemaker-type device placed in the abdomen, which constantly stimulates the brain.

This process is called deep brain stimulation, a technique that Professors Sah and Silburn, and Associate Professor Coyne, have used to change patients’ lives.

Since the trial, all participants have undergone an incredible transformation. One has started his own business, while others have become married, and had children.

“The people in the study had decades of symptoms that had not responded to the best medication that we’ve got and the best therapy that we’ve got, so they were really suffering,” Dr Mosley said.

“By targeting brain circuits implicated in anxiety and compulsive behaviour, we were able to modulate those circuits with electricity and reduced the persistent symptoms of their psychiatric illness.”

Deep brain stimulation has previously been successful in alleviating the symptoms of Parkinson’s disease, but there have been far fewer studies involving severe OCD.

The participants in the trial were aged between 35 and 60 and had lived with crippling OCD for several decades. The first participant was implanted with the device in 2015 and the last was implanted in 2019, with the trial lasting more than four years.

Incredibly, the treatment had no negative effects on the patients’ quality of life during the trial.

They were able to swim, play sport and travel. Only deep-sea diving and welding were off limits, due to the electrical interference these activities create.

It was the first time in Australia that researchers had used a randomised double-blind trial involving deep brain stimulation for a psychiatric illness.

“What we’ve done in this trial is contribute further to the evidence base that deep brain stimulation is a real, effective treatment option for people with a severe psychiatric illness that haven’t responded to any other treatment,” Dr Mosley said.

For three months during the trial, the participants didn’t know whether their devices were turned on or off.

There was no way for them to tell, as they couldn’t feel the stimulation working.

The people assessing them were also unaware if the devices were on or off.

Only after the three months were the participants informed.

“These people have the system and it’s always on and it’s always there alleviating symptoms,” Dr Mosley said.

“It seems from worldwide experience that this needs to keep going for life.”

The clinical trial indicates that it takes anywhere from six to 12 months for the deep brain stimulation to start creating real change to a patient’s behaviour.

“It’s like a snowball effect,” Dr Mosley said.

“The first thing they notice is that intrusive unsettling thoughts are less intense. As they become less intense, they are able to tolerate more and they’re able to resist some of the behavioural rituals that take up so much time.

“They have a lot more time in the day, they are less distressed, they are now able to work, they’re able to interact with other people and create relationships.”

One of the participants, Nanette Vardy-Forth, has lived with OCD since she was five.

Before she left the house, she found herself checking every tap and every light multiple times to ensure that they were turned off.

She believed that if she failed to do this properly, something awful would happen to a loved one.

Now aged 51, this obsession had become a ritual that consumed most of her waking day.

“It’s [a lot of] rearranging everything until it feels right in your head that something bad’s not going to happen,” Ms Vardy-Forth said.

“And that can take a while... leaving the house was a challenge. If I did go out, I would still drive by the house three to four times to make sure all the doors were shut.

“It was easier to just sit and watch TV all day rather than deal with all the checking.”

Her OCD got to a point where it controlled her life. It determined what she wore, and she began to believe that bad things would happen to her if she didn’t wear certain outfits on certain occasions.

Conventional medications and cognitive behavioural therapy did not help.

So, when her doctors offered her the drastic step of brain implants, she said yes.

Dr Mosley stressed that the treatment was only for patients with the most severe symptoms of OCD imaginable.

These patients had become resistant to regular forms of treatment. By treating this small group of patients, the team was able to precisely show the benefit in potentially providing the treatment to more Australians.

“This treatment is really at the pointy end of psychiatry,” Dr Mosley said.

“It’s reserved for people who are treatment-resistant, and is a treatment that needs to continue long-term.”

The next step for the team of researchers is to demonstrate that this treatment should be made available to all Australians.

Dr Mosley hopes the Australian Government will consider subsidising it under the Medicare scheme.

“If you take a more longer-term view of it, the fact that you have people coming off welfare and going into jobs, that’s obviously very good for the economy,” he said.

“In order to offer it to more people in Australia, we need to convince the Australian Government to reimburse it through the Medicare system.

“That’s one of the things we’re going to be looking at next, going to them and providing our evidence – and evidence around the world – and saying that we think this is an option for a small number of people and we want to offer this treatment for carefully selected members of the public in specialised treatment centres like ours.”