DBS Brain Op changed my life

Posted Wed 29th May 2024 at 12:54
by Tom Dufton

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Tom Dufton shares his journey to this pioneering treatment

Hello, my name is Tom Dufton and I have had Tourette Syndrome for 31 years. It started at 5 years old, and I was eventually diagnosed at 15 years old. I am married with a beautiful son and a successful gardening business based in the southwest in Cornwall. For me, life is good, and I enjoy every second of it, but this hasn't always been the case.

My tics began with me rolling my eyes back and around and grunting through my nose. As well as this I began kicking my leg out to the side as I walked along. This was the beginning of my symptoms. During primary school, life was pretty simple, and I had very few issues in terms of social problems. I had friends, a good school life and overall, I was happy. Although I was aware that I had these strange movements and noises that I made, I really did not think too much about it.

It was not until I went to secondary school that things began to take a turn for the worst. People began to notice these movements and noises and made comments. Life became very difficult for me at this point. I had no answer as to what was happening due to having no diagnosis yet, people saw that vulnerability in me, and some took advantage of it.

Eventually I went away with the Air Cadets to a camp for a week in Wales. Upon returning, and after having a distinct lack of sleep for that week, I was a mess! My tics were uncontrollable, erratic, violent and constant. It was at this point at the age of 15 that my mum discovered I might have Tourette’s! Eventually I was in front of a specialist who gave me the diagnosis. At first, I went into denial but something inside me told me that there was not much I could do about it, so I decided that there was no choice but to get on with what was happening to me. At this point the rest of my life began.

Flash forward 20 years or so, I found myself in a life that if you had asked me at 15 years old, I would have said no chance in any of it happening. I have worked abroad in France for 10 years in the French Alps and Northern France in Brittany, I was fluent in French too. I became a climbing instructor, made a best friend, appeared on a BBC 2 documentary about working with Tourette’s, as well as meeting the woman of my dreams, getting married, becoming a homeowner and a father.

Recently, I was put in touch with two professors who were running a trial on Deep Brain Stimulation for people with severe Tourette’s. The idea of the trial is to prove that this is an effective treatment for Tourette’s and get the treatment onto the NHS and make it available for people who desperately need the treatment. After a meeting in London, I was accepted onto their trial. Four weeks later I was back in hospital undergoing the operation. After 5 hours the operation was complete and for two days, I felt like I had been in ten rounds with Mike Tyson. 3 days after the op, The DBS system was turned on very mildly. Of the two electrodes planted into my brain, each having 8 stimulators on them, one stimulator on each was turned on. Honestly, within days I felt a difference. I was calmer, my tics had decreased substantially, and this was only in the first week.

After a 2 week stay in the hospital I came home and began life with the new treatment. My symptoms had already begun to decrease, and my confidence was soaring. I now must return to London once a month for 6 months to have the DBS stimulation tweaked to find the best settings for me personally! I really feel strongly that this treatment is going to change my life for the better and hopefully others in the future.

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