Emma developed epilepsy after having viral encephalitis when she was 17. She collapsed at the cinema and went into a seizure that she didn’t come out of. As result she went into a coma and wasn’t expected to survive it.
Emma was diagnosed with epilepsy at 18. She struggled to come to terms with the diagnosis and couldn’t understand why it had happened to her. At the time she was told her epilepsy would be controlled by medicines. This was not the case and she had a vagus nerve stimulation (VNS) implant at the age of 20. At the time this didn’t work for Emma, but looking back she’s not sure whether her student lifestyle, at the time had an impact on her seizures. The VNS was removed and Emma began to undergo tests to see if she would be suitable for brain surgery.
The tests eventually showed that Emma could benefit from brain surgery. Doctors warned her that it might not stop the seizures, but could improve their frequency and severity. Emma thought that this was a risk worth taking. Aged 24, she had brain surgery and seven and a half parts of her brain were removed. After the surgery Emma carried on taking epilepsy medicines and her seizures improved a little. However, this didn’t last and her seizures returned to normal. She also experienced some long term side-effects after her brain surgery, including losing her hearing on one side and some feeling on one side of her face.
Despite all this, Emma is still positive about the whole experience
“Even though the VNS and surgery didn’t work for me, it was still worth giving them a try,” she says. “I know that I have explored every option so far and I owe that to myself and my family.”
Now, Emma has uncontrolled seizures on most days, both generalised and focal. She lives with her husband and they have two children, a son who’s almost four and a daughter who is one. She found that in her last pregnancy the frequency of her seizures reduced. Her neurologist thinks that this may mean her seizures are linked to her hormones, as her seizures also become more severe for a two week period each month, when she experiences around five to 50 seizures each day. As a result they are trying a new approach to her treatment and she takes phenytoin in the two weeks she is more susceptible to seizures. At the moment, this seems to be improving her seizure control. If this changes they will consider a hormone treatment, such as the Pill.
Emma still hasn’t given up on other treatments and has had further appointments with her neurology team
She is hopeful that trying VNS again or deep brain stimulation (DBS) could be future options. She would encourage people who aren’t seizure free to try other treatments.
“Epilepsy doesn’t have to define you and, by exploring all of the options, you give yourself a better chance of a better future.”
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