December 21, 2008
After much deliberation, Prasad Likhite, 30, has finally made up his mind to go under the knife. “The pre-surgery counselling helped. Initially, the idea of undergoing surgery was very scary. But, the medicines just weren't helping,” he says. Surgical treatment for epilepsy is not a new development, but the fact remains that not many go for it. Many continue to rely on drugs, even if they are ineffective.
Characterised by recurrent unprovoked seizures, epilepsy—often called a sacred disease or the curse of the demon—in many ways is still a closet ailment in India. The myths and superstitions surrounding epilepsy, together with the social and cultural stigma attached to the disease, make treatment a challenge. According to the World Health Organisation (WHO), there are approximately eight to ten million people suffering from epilepsy in India. Over 30 per cent do not have seizure control, even with the best available medications. Despite this, most people opt to live with the chronic neurological disorder, rather than go in for surgery.
Sachin Singh, 16, a junior college student from Mumbai, and his family hadn't given surgery a thought until recently. Born with a defect in the temporal lobe in the brain, Sachin had met with near-fatal accidents on many occasions. “I remember standing in front of a speeding truck right in the middle of the road once,” he says. The unpredictability of the seizures makes them all the more dangerous, adds father Shivraj. “It had become a way of life,” says Sachin. But not any more, now that he has undergone surgery and decided to crack the Common Entrance Test (CET) next year. Incidentally, he is the 100th patient to have undergone surgery at Mumbai's KEM Hospital's comprehensive epilepsy centre, which started in 2001.
“If the patient doesn't respond to drugs and is diagnosed with medically intractable epilepsy, he needs to be evaluated for surgery immediately. There's no point in delaying the treatment,” says Dr Sangeeta Ravat, professor and head of neurology at KEM Hospital.
However, surgery is not for everyone. It is essential to identify the right candidate. “The patient has to undergo an in-depth evaluation. Tests like Video-EEG and MRI scan are conducted to help identify the possible cause and type of epilepsy, followed by extensive neuropsychological tests,” says Ravat.
Epilepsy cannot always be cured in the real sense of the term. According to the Indian Epilepsy Association, in about 70-80 per cent of the cases, seizures can be totally controlled with the help of antiepileptic drugs (AEDs). Incidentally, the word ‘epileptic' is no longer used; the politically correct term is ‘a person with epilepsy' (PWE). As a matter of rule, a PWE starts with a single drug (monotherapy) and, if the seizures fail to come under control, polytherapy is recommended—i.e., the patient is put on two or more AEDs. If that too doesn't help, surgery is the solution.
“The seizures must be disabling and the goal of epilepsy surgery is to make the patient seizure-free without facilitating any fresh deficits,” says Dr Manjari Tripathi, associate professor, department of neurology, All India Institute of Medical Sciences, Delhi. For instance, the surgical removal of either side of the temporal lobe may affect other regular functions like memory, speech and motor functions. So the doctor and the patient need to take a holistic view of the situation. “The challenges lie in defining the area to be surgically removed, counselling the patient and having a dedicated team of doctors, including an epileptologist, neurosurgeon, neuroradiologist, nuclear medicine specialists, nursing staff and technicians,” says Tripathi.
But before zeroing in on surgery, it is essential to make sure that the non-responsiveness to medication is not false, say, due to factors such as non-epileptic or pseudo seizures, inappropriate medication, incorrect dose or any other social conditions, cautions Tripathi. “Some seizures are not real, in the sense that a Video EEG cannot identify any epileptic focal point in the brain,” says Dr Urvashi Shah, neuropsychologist, KEM Hospital. This is not to say that patient is ‘faking' the seizures, but that the problem is psychological and not neurological, she adds.
When it comes to epilepsy surgeries, the success rate over the last decade has been encouraging. “It's about 80-90 per cent in the case of mesial temporal sclerosis and temporal lobe surgeries, and 60-70 per cent in patients with extratemporal lesions,” says Tripathi. Despite this, there is a huge surgical treatment gap, says Dr K. Radhakrishnan, senior professor and head of the department of neurology, R. Madhavan Nair Centre for Comprehensive Epilepsy Care, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Thiruvananthapuram. It is one of the premier epilepsy centres in the world having performed 980 surgeries till date.
“There's a need to develop more epilepsy centres, considering that at any point in time at least 30,000 to 50,000 people in the country actually need to undergo surgery,” says Radhakrishnan. But, this is not easy, considering the expertise and labour-intensive service that are on demand, he explains. Cost is another important factor. According to him, the actual cost of surgery is around 01,00,000, while the additional expenditure differs from hospital to hospital. “Even then, it's cheaper than a cardiac surgery,” says Dr Joy Desai, honorary neurologist, Jaslok Hospital, Mumbai. Besides, it works out to be economically viable when compared to the enormous price of most AEDs. “In most cases, the medications are gradually reduced over a period of three years post-surgery. And, complete cure is possible.”
It is about time we gave surgery a chance. Many, like 27-year-old Mugda Salvi from Mumbai, have got a new lease of life, thanks to timely surgery. “For the first time I know what it feels like to be independent,” says Mugda. Right from fighting seizures on the first day of her SSC exams to living in constant fear of a ‘sudden attack' in college, Mugda rues the fact that she didn't get the chance to enjoy “the best days of my life”. However, she is glad that she has a second chance now. “It's not a bed of roses, though. My parents are struggling to find me a groom, because we choose to be honest about my surgery,” she confides. Medical experts are of the opinion that unless the condition is hereditary, there's no cause of concern vis-a-vis offsprings. “But why take a chance?” seems a convenient excuse for most prospective suitors. Whoever said the ‘burden of normalcy' (coming to terms with leading a normal life) was going to be easy?
Nothing less than a miracle!
Narendra Gamre, 35, is still amazed about the fact that he is ‘normal' now. It has been seven years since he underwent surgery. For the last five years, he has been off medication. “People used to be scared of him. They thought there was some devil's spirit in him,” says brother Sugat. Having had a ‘socially boycotted existence' for over two decades, Narendra is finally happy to be married. “I have a modest job as well. For me, all this is nothing less than a miracle!”
Essaki Kumar, 28, had always sensed the disappointment on his father's face, when he failed to learn even the basics of tailoring, the family profession. It was only after the pre-surgical evaluation in 2000 that the father-son duo was told of the medical reason for Essaki's failure to fulfil his father's dream: he had a problem with the right temporal lobe, the area responsible for visual spatial development. “Post surgery, there have been no seizures,” he says. What's heartening for Essaki is that his father is finally proud of him. “I work as a cashier at a restaurant,” says Essaki.
The brain regularly generates electrical impulses which travel along the neurons. A seizure occurs due to an abnormal electric signal in the brain. Epilepsy is the tendency to have recurring seizures.
The spinal cord is the vital link between the brain and the rest of the body. It is also the coordinator of the reflexes. It is 45cm long in men and 43cm long in women and contains 13,50,000 neurons.