Jayne Bargent and her partner Mark Trick
Jayne Bargent underwent 'deep brain stimulation' two months ago – a procedure that modulates the circuitry in the brain via electrodes. This was attempted after all other available options for treating her Tourette's syndrome had failed.
The past three years of Jayne's life had seen her become increasingly withdrawn because of persistent violent tics associated with Tourette's as well as dystonia, a condition that is the consequence of years of medication used to treat Tourette’s since childhood.
Jayne and her partner had been forced to stop going to restaurants and even walking their dog in the woods because of the devastating effects of her condition.
But on Tuesday this week, less than an hour after doctors at the National Hospital for Neurology and Neurosurgery (NHNN) switched on the two electrodes that had been implanted into Jayne's brain, she was showing signs of a dramatic recovery. Previously, she had been unable to control the sudden, violent movements of her neck and head, and struggled to walk in a straight line.
Jayne, 55, of Denmead, was overjoyed about the early results. She said: “It's amazing - I just don't feel like the same person. This is going to give me my life back, I have had three years of this getting gradually worse and they press a few little buttons and everything improves dramatically.
“We had stopped socialising and didn't get out. I wouldn't eat in front of anyone because the food would fall out of my mouth. I couldn't even go and lie on the bed to relax if I was having a bad day because I would still be twitching and have the pain in my neck. I couldn't imagine living the rest of my life as I was.
“But now I'm going to be able to get back on the phone to people, I can go out for walks and start riding again. It's going to totally, totally change my life.”
DBS has already been established as a very effective treatment for patients with other movement disorders such as Parkinson's disease, dystonia and other forms of tremor.
It works by placing electrodes very precisely within areas of the brain that are known to be involved in producing controlled movement. A pacemaker battery is used to deliver low levels of electricity to precise areas of the brain to modulate activity and allow more 'normal' movements.
While Tourette's syndrome is predominantly a problem during childhood that improves through the teenage years, there are a minority of patients who have severe disability from violent tics that persist into adult life.
The Unit of Functional Neurosurgery – a collaboration between the NHNN and the UCL Institute of Neurology - is running the first UK-based trial to evaluate the impact of DBS on patients with Tourette's.
Tom Foltynie, consultant neurologist and senior lecturer, who has been managing Jayne's treatment, said: “We have a few patients like Jayne, where we have seen some encouraging results from using deep brain stimulation for Tourette's. We now need to press ahead with a randomised trial over a period of months. There are encouraging signs of improvement in Jayne's movement but it is still early days. DBS is a journey we need to embark on with patients over a period of weeks, months and years. We need to tailor the brain stimulation to a level that suits her and adjust it carefully to ensure the best response.”
Mark Trick, Jayne's partner, added: “I am astounded by the difference in Jayne over such a short period of time. I just cannot thank everybody at this hospital enough. It's brilliant to have Jayne back.”
The Unit of Functional Neurosurgery, is supported by the Parkinson's Appeal, the Edmond J. Safra Philanthropic Foundation and the Monument Trust
Patients with severe refractory Tourette’s syndrome who would like further information about DBS should approach the Tourette’s clinic at the National Hospital for Neurosurgery by emailing firstname.lastname@example.org