- Experts say 15,000 patients considered at risk of sudden adult death
- This could be either from the damage to the brain that seizures cause or from having them in a situation that leads to death e.g. swimming
- Delicate op to remove part of the brain can end the most severe symptoms
- But patients must undergo a raft of tests at specialist centres and only a handful exist
Radical brain surgery for epilepsy offers a lifeline to those who suffer from a condition that causes 1,000 deaths each year through seizures. Yet few are ever offered the operation because many doctors don’t even know it’s an option.
According to experts at the National Hospital for Neurology and Neurosurgery in London, 15,000 patients are currently considered at risk of sudden adult death from epilepsy (SUDEP), either from the damage to the brain that seizures cause or from having them in a situation that leads to death, such as while swimming.
A delicate operation to remove part of the brain can bring an end to the most severe symptoms, but to be eligible, patients must undergo a raft of tests at specialist centres to pinpoint those who will benefit the most. The trouble is that only a handful of these centres exist.
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Delicate: The position of the hippocampus, which in some patients is the part that generates seizures, and how it is removed
Because of this, just 300 such procedures are carried out annually, meaning scores of deaths every year are, potentially, avoidable.
Epilepsy occurs when neurons or brain cells send out abnormal electrical impulses, disrupting the brain’s messages to the body, which may result in seizures, characterised by a loss of consciousness and convulsions, and erratic behaviour.
It is traditionally treated with medication but brain surgery can leave 60 per cent of patients with ‘seizure freedom’.
And the younger the patient the better, according to Professor Ley Sander, head of the World Health Organisation Collaborative Centre for Research and Training in Neurosciences and medical director of the Epilepsy Society.
He says: ‘We end up seeing a lot of patients who have been through paediatric clinics and on to adult clinics when they have already missed out on education and social contacts. We have carried out operations on those in their 50s, 60s and 70s. But Great Ormond Street, for bluehost example, will carry out surgery on the under-fives.’ Prof Sander says that each year, the pool of those with epilepsy grows. ‘About 30,000 people are diagnosed with epilepsy in the UK each year and while 10,000 to 15,000 could benefit from surgery, only 300 people have it annually.
‘The ideal candidate is someone whose scans indicate a lesion in the brain which shows without doubt the source of their epilepsy. If it is accessible to the surgeon, then we can go ahead.’
The operation is called a lobectomy. After opening the skull, neurosurgeons remove a part of the brain called the hippocampus which lies within the temporal lobe.
This lobe is one of the four major lobes of the brain and is located behind and beneath the frontal lobe – involved in processing sensory input from the eyes, ears and nose. The surgeon must take great care not to damage the parts responsible for vision.
The hippocampus is associated with long-term memory and spatial awareness. It is this part which in some patients generates seizures.
Prof Sander says: ‘This procedure is not for every person with epilepsy, which can be disappointing.’
He adds: ‘There are, of course, risks with surgery but this is weighted against those of uncontrolled seizures.’
Up to a third of patients who have the procedure will have some problems with vision, memory loss and changes in mood after surgery, but 75 per cent will be able to stop taking medication.
‘One patient, a man in his 50s got his first proper job after surgery,’ says Prof Sander, who believes that the benefits are huge – as seen in the case of Jasmine Smith, from London.
At 17, Jasmine was training to be a dancer when she suffered seizures. A brain scan revealed she had a tumour which doctors believed had been present since birth but had grown with her and was now causing epilepsy.
David and Samantha Cameron’s son Ivan died in 2009, at the age of six, from complications arising from severe epilepsy and cerebral palsy
Jasmine, now 23 and training to be a nurse, says: ‘I had surgery in June 2011 and it was incredible. Although surgery can be lifesaving, it is also life-changing. I was really exhausted for months afterwards and although my long-term memory and my word-finding were affected, my short-term memory is better.
‘It does take a while to recover as your brain is so sensitive. But I am now seizure-free and do not take any medication.’
One in every 100 people has epilepsy, which is three times more common than multiple sclerosis and more than three times as common as Parkinson’s disease. There are more than 40 types.
While it is not known what triggers the condition in the majority of cases, there may be a hereditary element and it is most often diagnosed in childhood and in the over-65s.
It can also be caused by damage to the brain after strokes, brain tumours and severe head injuries.
There is no definitive test for the condition, but electroencephalograms (EEG) record brainwave patterns which give specially trained doctors information to make a diagnosis.
Prime Minister David Cameron’s eldest son Ivan died in 2009, at the age of six, from complications arising from severe epilepsy and cerebral palsy.
Actor John Travolta lost his son Jett, who was said to have ‘a history of seizures’, in the same year.
There are only six hospitals in the UK that have the multi-disciplinary medical team required to carry out lobectomy.
‘More patients could benefit from this procedure,’ agrees consultant neurologist Dr Nicholas Silver, at the Walton Centre for Neurology and Neurosurgery, Liverpool.
‘But not everyone who goes through surgery will be cured and some will be left with severe problems like depression.
‘A lot of those at risk of SUDEP will have numerous other problems, such as serious learning disabilities, which mean they may not be eligible. But there are a significant number o