We spoke to a few young people who'd had brain surgery or VNS and here they talk about their experiences.

Brain surgery

Different types of brain surgery (also called neurosurgery) can help some people with epilepsy. Surgery might be considered if anti-epileptic drugs (AEDs) have not stopped or significantly reduced the number of seizures and the physical cause for the person's epilepsy is found in only one area of the brain (localised cause). 

To assess if people are actually eligible for surgery, they have to have various important tests. This can be a long process and involves having EEGs, MRIs, memory and psychological tests.

Donna describes the various tests she had to find out if surgery might help her. The type of epilepsy she had made her a good candidate.

Deciding to have surgery

Having any kind of surgery on the brain is a big decision and people may have lots of questions or concerns that they want to discuss before making up their mind. 

The people we spoke with said that their doctors suggested the possibility of surgery because they hadn't been helped by any of the AEDs. 

Donna's consultant suggested brain surgery because none of the AEDS had controlled her seizures and he thought she would be a good candidate for surgery.

To help them decide whether to have surgery, young people had received a lot of information and leaflets from the hospital. The decision also involved their parents and the rest of the family. One woman with a baby daughter said she decided to have the operation partly for her daughter's sake, so that she would have a healthy mum.

People had also been informed about the risks of surgery so that they could make a fully informed decision about whether to go ahead or not. One man said his parents worried more about the risks of surgery than he did.

Before his surgery, Nick wanted to get as much factual information about the operation and risks as possible. He would then know what he 'was dealing with'.

People said they'd been 'worried', 'scared' and 'anxious' about having surgery but, once they'd made the decision, they were determined to go through with it. They had very poorly controlled epilepsy, with several seizures per week or even a day, and felt that epilepsy restricted every part of their lives. Surgery seemed the last available option and they wanted to take it. One woman said:

“It was an escape route from the epilepsy. It's like a “Get out of Jail” card isn't it. If that's my only way out, I was gonna grab it with both hands. I'd be stupid not to. You know you'd spend your life thinking, “Well what if?” and I might not have had that chance again.” 

Darren decided to have surgery because he 'had to take the chance to get rid of epilepsy'. He was scared before the operation but the premedication helped him relax.

The surgery and staying in hospital

Neurosurgery for epilepsy is performed in specialised hospitals and units in the UK. For most people this meant going into a hospital some distance from home.

People didn't know - and didn't want to know - much about the details of the actual surgery. One man, whose epileptic seizures were caused by an arteriovenous malformation (AVM) in the brain, needed a series of operations to treat it. AVM is a tangle of blood vessels in the brain or elsewhere in the body, where bleeding can cause serious damage. AVMs are very rare. He said his doctor had been really understanding of other factors in his life and scheduled the operation after his GCSEs so he could focus on his exams first. 

Nick describes the surgery he had to treat the AVM on his brain.

After brain surgery, people stayed in an intensive care unit for a few days and were then transferred to a general ward for a few more days.

Everyone we spoke with said they'd experienced very bad headaches after the surgery and been given painkillers both by mouth and directly onto the scar on the head.

Robert describes how he felt just before the operation and the pain he had straight after.

Donna describes the first few days on the ward after her surgery. Back at home, she didn't want to wear a hat to cover the big scar on her head - 'it gave people something to look at'!.

Life after brain surgery

For some people 'successful surgery' means completely stopping the seizures; for others it means fewer or less severe seizures. Usually it takes two years after surgery to fully assess how successful brain surgery has been. For around 70% of people who have surgery, the seizures stop for good (National Society for Epilepsy).

Donna has been seizure-free since her surgery. Her memory and concentration are much better and she feels 'sharper' than before. The improvement has been 'unbelievable'.

After the surgery, Robert can pick up the sounds when he's playing music much better than before and he's also less nervous.

All the people we spoke with emphasised how hard both physical and emotional recovery from the operation had been. However, one man's doctor had reminded him that, being so young, his body was at 'the best age possible to recover'. One person had several seizures shortly after the surgery and the other half of his body was paralysed (monoplegia) but he gradually recovered from it.

Recovery from the surgery was physically and emotionally 'tiring' for Nick and progress was slow. His other arm and leg were paralysed but he gradually recovered.

A couple of people said that emotional recovery from surgery was a lot harder than the physical. These young people experienced severe depression after their surgery. Depression is a recognised complication of temporal lobe surgery but only occurs in a small minority.

Recovery from the operation was hard for Darren. He was severely depressed and stayed in a psychiatric ward for a while to recover.

One woman said she hadn't been prepared for the massive emotional impact the surgery would have on her and says she would've liked to have been better prepared for it.

Donna found it difficult to adapt to a seizure-free life. After 25 years, she felt epilepsy was a part of her. She went through 'a grieving process' and depression after surgery.

Of the people we spoke with, two had been completely seizure-free since the operation (for one, this was for ten months, for the other, nearly two years) whereas for two of the young men the seizures had come back. One started having seizures pretty much straight after the surgery and the other's seizures came back two years after surgery. Both said that the seizures have been different from those they'd had before surgery. 

Two years after surgery, Darren's seizures came back and he's been having them ever since. He used to have seizures only during the day but now also has nocturnal seizures.

One man's seizures had become less severe but more frequent since surgery.

Donna says surgery was 'the hardest but the best' thing she did. She advises others to pace themselves after surgery. She did 'too much too soon'.

Vagus Nerve Stimulation (VNS) 

VNS is a treatment for epilepsy where a 'pacemaker' is implanted under the skin on the left side of the chest almost under the arm. This is connected to a lead with three coils at one end. These coils are wrapped around the vagus nerve in the left side of the neck in a small operation. The generator sends impulses from the vagus nerve in the neck to the brain at certain intervals to reduce the frequency and intensity of seizures.

The side effects of VNS include change in voice tone when the stimulator comes on, sore/tickling throat, shortness of breath and coughing.

VNS aims to reduce the number, length and severity of seizures. For some, seizures can stop altogether, while for others they can become less frequent. For some people, however, VNS has no effect at all.

Morven explains how VNS works and the side effects she's had with it. It hasn't helped her and the stimulator will be removed soon.

A couple of other people we spoke with had VNS suggested to them by doctors and were thinking about this option.

Last reviewed May 2010.

Last updated March 2011.