Epilepsy

Brain surgery and VNS for epilepsy

We spoke to a few young people who'd had brain surgery or Vagal Nerve Stimulation (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) haven't 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 see if people are actually eligible for surgery, they have to have various important tests. This can be a long process and involves having EEGs, Video - EEG telemetry, MRIs, memory and psychological tests.

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. 

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.

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.” 

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. 

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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.

Life after brain surgery

For some people 'successful surgery' means completely stopping the seizures; for others it means fewer or less severe seizures. After a pre-surgical evaluation the neurosurgeon/neurologist would be able to give an idea of the likely odds of a seizure free outcome. Usually it takes two years after surgery to fully assess how successful brain surgery has been.

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 (hemiplegia) but he gradually recovered from it.

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 epilepsy surgery but only occurs in a small minority.

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.

Of the people we spoke with, two had been completely seizure-free since the operation (ten months for one, and nearly two years for the other) 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. 

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


Vagal 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. Very few people treated by VNS become totally seizure free, and most people continue to take anti-epileptic medication. How and why VNS works is not fully understood, but it is thought that stimulating the vagus nerve alters the chemical transmissions in the brain.

The battery for the VNS device typically lasts up to 10 years, after which time a further procedure will be needed to replace it.

A couple of other people we spoke with had VNS suggested to them by doctors and were thinking about this option. If a consultant believes that VNS might be an option there are a number of criteria a person has to meet:

For Focal-Onset Seizures:

  • The person has seizures that occur in spite of the correct levels of anti-epileptic drugs or 
  • seizures cannot be treated with anti-epileptic drugs because of intolerable side effects.

And

  • The patient has failed or is not eligible for surgery.

And

  • At least 2 complex partial seizures per month OR recurrent life threatening status epilepticus
  • 3 first line anti-epileptic drugs have been tried over a period of at least 2 years.

For Generalised Seizures:

  • The person has seizures that occur in spite of the correct levels of anti-epileptic drugs or 
  • seizures cannot be treated with anti-epileptic drugs because of intolerable side effects.

And

  • The patient has failed or is not eligible for surgery. 

And

  • At least 1 generalised seizure per month OR recurrent life threatening status epilepticus
  • 3 first line anti-epileptic drugs have been tried over a period of at least 2 years.
  •  
Last reviewed May 2016.

Last updated May 2016.

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