Tourette’s tic made me afraid to hold my son. Then doctors placed electrodes in my brain – and this is the effect it has had on my life…

For most people, eating out is a pleasure, but until recently for Tom Dufton, like many other social outings, it often degenerated into an experience to be endured rather than enjoyed.

It wasn’t that Tom, 36, who runs his own horticultural business, isn’t sociable – he is – it was the reaction of others that made the experience so uncomfortable.

Since the age of six, Tom has lived with Tourette’s syndrome, a neurological condition that affects around 300,000 people in Britain, according to the charity Tourettes Action, and causes them to make noises or movements – known as tics – which they often experience to have. no control.

In Tom’s case, these tics have changed over the years, from blinking or clicking his jaw to growling and, at one point, randomly kicking out his leg. Five years ago it turned into almost constant spitting.

‘Of all the tics I’ve had, this one has lasted the longest and been the hardest to deal with,’ says Tom, who lives near Truro, Cornwall, with his wife Emily, 32, who works in human resources, and their son, Hendrik.

‘I absolutely hated it. It made me so self-conscious. I saw people staring and thinking, “Why is he doing that?” I wanted to scream, “I can’t help it!”

‘I wouldn’t go to the theater or the cinema; it’s so quiet there that anyone would have heard me, which would have been embarrassing,” says Tom.

But now he can, because in March he underwent a five-hour operation to place two electrodes in his brain, a procedure known as deep brain stimulation (DBS). These electrodes send electrical impulses that calm activity in the part of his brain thought to be causing his symptoms.

There was no guarantee it would work – the procedure was part of a trial to see who would benefit from it – and the risks were significant. “I was warned this could cause a stroke, personality changes, infections and death,” says Tom. But the gamble seems to have paid off and the surgery was ‘life-changing’.

He says, ‘My spitting up has pretty much stopped, as have my other tics (such as making noises while speaking and occasionally jerking movements) and I can’t explain what a problem that is. It has made a huge difference to my self-confidence and I am already going out more.

‘I recently went to a pub quiz, which would have been very awkward before.’

Tourette’s syndrome is four times more common in boys than girls and usually starts around the age of seven, “but a small number develop it as adults,” says Eileen Joyce, professor of neuropsychiatry at University College London. She says about 60 percent of children grow out of it, but for the rest it can become a serious problem.

Singer Lewis Capaldi said his 2022 diagnosis was a relief as he feared his symptoms – his left shoulder jerked repeatedly and his head twitched – might be due to “a degenerative disease.”

In a small proportion of patients, the tics are so severe that they can harm themselves, says Professor Patricia Limousin, a neurologist at the National Hospital for Neurology and Neurosurgery in London, who is leading the trial in which Tom is taking part.

“I’ve seen people whose tic causes them to jerk their neck repeatedly and eventually develop arthritis,” she says.

‘I’ve even known it to damage the spinal cord and cause paralysis. It is rare, but some patients require a wheelchair as a result.’

Although Tourette’s disease is often associated with an uncontrollable urge to swear – known as coprolalia – less than 10 percent of those affected do so.

“It’s not just swearing, they use insulting words,” Professor Joyce explains. Tourette’s disease is believed to be caused by overactivity in a communication circuit located between areas of the brain that control movement.

‘People with Tourette’s seem to have fewer inhibitory interneurons than normal. These are nerve cells that control the activity of other nerve cells in the brain that control movement,” says Stephen Jackson, professor of cognitive neuroscience at the University of Nottingham.

‘Without these inhibitory cells, nerve pathways in this area spontaneously fire and are not under a normal level of control.’

It is not clear why these inhibitory cells are missing. It could be genetics (Tourette’s disease has a genetic element), but “another possibility is inflammation,” adds Professor Jackson.

Tics are thought to begin in childhood (when the brain begins to develop) and decrease in some after the age of 18 ‘possibly because the brain adapts to the abnormality as they grow older,’ says Professor Joyce.

The impact of Tourette’s can extend beyond the tics.

“Those affected are often bullied or excluded from school,” says Professor Jackson. ‘People have been thrown off buses or out of restaurants or cinemas – and there is a risk of suicide.’

Professor Joyce says that when it comes to treatments, the best current evidence involves antipsychotics (such as haloperidol and pimozide), but these are given in much lower doses than for psychosis.

‘They work by blocking the transmission of a chemical in the brain (which sends messages between cells in the overactive area of ​​the brain) that is involved in the production of the tic,’ she explains.

However, they don’t work for everyone and can cause severe fatigue and/or restlessness, which some find unbearable.

Tom has been prescribed numerous antipsychotic medications over the years. Besides causing side effects like sweating, they didn’t stop the tics completely, but “suppressed them a little.” Still, he adds, “Without them, I wouldn’t be able to stop moving or tapping.” Tom also took medication for the anxiety and depression caused by his condition, as well as for obsessive-compulsive disorder and ADHD, which often coexist with Tourette’s. Doctors had warned him that taking so many tablets risked kidney damage.

Tom heard about the trial earlier this year from one of his specialists, who said he was eligible because of his age and the severity of his tics. Moreover, an extra incentive came with fatherhood.

“Henry is one of the factors that keeps me going through with this because I want to be in the best position possible as a father,” he says.

“I was worried about holding him in case I developed a tic that caused a jerky movement, and I didn’t want him to have to worry that I had Tourette’s.”

After discussing the risks with Emily, Tom decided to go ahead with the surgery.

The electrodes in his brain have a diameter of 1.5 mm and emit a constant electrical impulse. They are controlled by a pacemaker in his chest (connected to wires running through his neck) and can be turned up or down remotely by the patient or doctor to suppress symptoms.

‘It is the same treatment used for Parkinson’s and essential tremors, but in this case the electrodes are placed in a different part of the brain,’ says Professor Limousin.

‘Previous studies showed some benefit in severe Tourette’s, but also variability in response to treatment; we are trying to gain more evidence and understanding of the factors that influence this.”

A review of studies published in 2019 in the journal Neuropsychiatric Disease found that DBS reduced Tourette’s symptoms by an average of 40 percent.

But the procedure is only suitable for the most serious cases – about 5 percent of cases – because the risks for others are too great.

There are less drastic new treatments in the pipeline. Professor Jackson is part of a team that has developed a watch-like device called Neupulse, which was trialled by Lewis Capaldi.

When worn on the wrist, it emits electrical pulses that stimulate the median nerve, which runs from the wrist to the cortical areas of the brain. These areas are thought to be more sensitive in people with Tourette’s.

A study of 121 people who used it five days a week for a month found that it reduced tic severity by about 35 percent, according to a March 2023 report in the Journal of Neuropsychology.

The device, which is hoped to be in production by 2026 and will cost around £300 to £400, is now being assessed by the National Institute for Health and Care Excellence (NICE) to see if it can be made available on the NHS. .

Tom will have regular monthly checks to ensure the level of stimulation is right for him, but he has ‘quiet hope’ that his life will change forever.

“I was talking to my mom on the phone the other day and she was really overwhelmed by the fact that I was talking without sound or spitting,” he says. ‘I can’t quite believe how big a difference it has made.’