The BBC UK health website carries a story this week of a Devon man with Tourette’s syndrome who is to undergo a pioneering form of brain surgery.
Mike Sullivan, 32, who was diagnosed with the condition at the age of 12, has elected to undergo deep brain stimulation to help reduce his involuntary tics.
Tourette syndrome is an inherited neuropsychiatric disorder which begins in childhood. It is characterised by multiple physical (motor) tics and at least one vocal (phonic) tic
Mr Sullivan has tried a number of different medications. None has relieved his symptoms but many have given him serious and unpleasant side effects.
For deep brain stimulation a local anaesthetic is used and electrodes are put into the brain through the skull.
These are linked to a pacemaker-type battery in the patient’s chest then electrical impulses are sent to the brain to block the damaging signals.
A common perception of Tourette’s is that it is a bizarre condition, most often marked by the involuntary exclamation of obscene words, but actually this symptom is present in only a small minority of people with Tourette’s.[1] Between 1 and 10 children per 1,000 have Tourette’s;[2] as many as 10 per 1,000 people may have tic disorders,[3] with the more common tics of eye blinking, coughing, throat clearing, sniffing, and facial movements. The severity of the tics decreases for most children as they pass through adolescence, and extreme Tourette’s in adulthood is a rarity.
The exact cause of Tourette’s is unknown, but it is well established that both genetic and environmental factors are involved.[4] Gender appears to have a role in the expression of the genetic vulnerability: males are more likely than females to express tics.[5]
Tourette syndrome is a spectrum disorder—its severity ranges over a spectrum from mild to severe. The majority of cases are mild and require no treatment.
However Mr Sullivan said he has to work hard to suppress the almost continual tics while working with the public at Exeter Register Office. He describes this experience as exhausting and mentally draining. He says he is aware of the risks involved in undergoing brain surgery, but if it led to any improvement in his condition it would be worth it.
“Whilst I’m scared and it’s not something I’d choose to do, it’s more than worth the risk,” he said. “If it improves me even by 5% or 10%, it will make such a massive difference to my quality of life.”
Doctors at the National Hospital for Neurology and Neurosurgery in London are trialling the use of deep brain stimulation to treat not only Tourette’s Syndrome, but Obsessive Compulsive Disorder, which many Tourette’s patients including Mr Sullivan also suffer from.
Only a few procedures have so far been carried out worldwide, but Mr Sullivan has been recommended for treatment by Dr Tim Harrower, a consultant neurologist at the Royal Devon and Exeter Hospital.
Tourette Support Ireland hopes to develop a countrywide network to support adults with the condition at its annual general meeting at 11am on Saturday, February 19th, in the Ashling Hotel, Dublin. Dr Tara Murphy, clinical psychologist at Great Ormond Street Hospital, will offer advice on behaviour therapies for the condition, and there will be a music workshop for young people. Tel: 087-2982356 or e-mail support@tsireland.ie. Advance registration on tsireland.ie.
Notes
[1] Schapiro NA. “Dude, you don’t have Tourette’s:” Tourette’s syndrome, beyond the tics. Pediatr Nurs. 2002 May–Jun;28
[2] Lombroso PJ, Scahill L. “Tourette syndrome and obsessive–compulsive disorder”. Brain Dev. 2008 Apr;30(4):231–7. doi:10.1016/j.braindev.2007.09.001 PMID 17937978
.[3] Tourette Syndrome Fact Sheet. National Institute of Neurological Disorders and Stroke/National Institutes of Health (NINDS/NIH), February 14, 2007. Retrieved on May 14, 2007
[4]Walkup JT, Mink JW, Hollenback PJ, (eds). Advances in Neurology, Vol. 99, Tourette Syndrome. Lippincott, Williams & Wilkins, Philadelphia, PA, 2006, p. xv. ISBN 0-7817-9970-8
[5] Black, KJ. Tourette Syndrome and Other Tic Disorders.eMedicine (March 30, 2007). Retrieved on August 10, 2009.