Epilepsy Surgery - Northern Children's Epilepsy Surgery Service (NorCESS)
In 2007, Beth and her family were given devastating news. Beth had a brain tumour which would need urgent surgery. The family travelled to their nearest centre where Beth had two operations to remove the tumour. Beth and her family live in Cumbria but are from Liverpool originally. They felt there was only one place they wanted to go for their follow up treatment and asked to be referred to Alder Hey Children’s Hospital.
Beth’s mum Karen explains: “Alder Hey is home to us. I think we always took it for granted when we lived in Liverpool. Now we have moved away we realise how lucky we had been to have a world class facility on our doorstep.” Beth visited Alder Hey for regular MRI’s and other follow up treatment following her brain surgery.
Under the care of Alder Hey Consultants Dr Barry Pizer and Dr Urmi Das, her condition remained stable and the brain tumour did not return. Meanwhile she was keen to start a new and exciting chapter of her life. She was learning to drive and preparing to start University in September 2012 to study radiotherapy.
Then last August Beth had a tonic-clonic seizure. This is a common type of seizure where the body becomes completely stiff as all the muscles contract (the ‘tonic’ phase) before shaking dramatically (the ‘clonic’ phase). The seizures can last from a few seconds to a few minutes. The seizure left Beth unconscious and she was immediately taken to her local hospital. An MRI scan at Alder Hey indicated that there was a small re-growth on Beth’s brain: the tumour had recurred.
In January 2013, Beth had an EEG (electroencephalogram) test which records electrical signals from the brain. The EEG was looking to monitor any unusual activity in Beth’s brain. The test confirmed she had epilepsy.
Epilepsy is a tendency to have recurrent seizures and affects around 600,000 people in the UK. Seizures are caused by a sudden burst of excess electrical activity in the brain, causing temporary disruption in the normal message passing between brain cells.
Beth’s dad Andrew said: “This came out of nowhere. Beth had almost reached her five years of being clear from the tumour. She was looking forward to doing normal things like driving a car and going to University but then this happened. Since her diagnosis Beth has continued to have seizures and they have become more and more frequent. We can’t predict when she can have a seizure which means she has to be really careful all the time. She can’t have baths and has to tell us every time she is having a shower. We have to check on her at night; any time we hear a noise we think she is having a seizure. She can’t drive and her independence is really affected so she couldn’t start University.”
Approximately one third of epilepsy patients do not respond to medication, continuing to experience seizures. For a proportion of this group brain surgery can be highly effective, leading to seizure freedom in up to 80 per cent of cases. The NHS announced in May 2012 that Alder Hey Hospital and Manchester Children’s Hospital will jointly become one of four specialist services in the country to provide epilepsy surgery. Beth will now have surgery at Alder Hey to remove the growth and hopefully prevent more seizures.
Beth will also benefit from Alder Hey’s 3-T intra-operative MRI scanner, the only one in Europe for children and one of only two such facilities in the world. The scanner was funded by a £3million donation from the Barclay Foundation, the largest single donation received by the Trust. This scanner’s high-resolution magnetic imaging – supplied by Philips Healthcare – combined with an adjacent state of the art theatre featuring BrainLab image guided navigation systems – enables scans to be carried out in the operating theatre during surgery. This provides the surgeon with highly accurate, real-time information used for navigation and updates on progress.
Regarded as the ‘gold standard’ for neurosurgery, the scanner has essential benefits for patients who have any kind of brain surgery. It allows surgeons to safely and completely remove tumours and enables much more precise surgery – this can be life changing for conditions where milimetres matter.
Most importantly for Beth, the scanner has also had a massive impact on epilepsy diagnosis and enables a possible surgical ‘cure’ for this debilitating condition – the 3-Tesla magnet is able to reveal tiny lesions on the brain of epilepsy patients not previously visible on a regular MRI scan. As well as identifying the lesion, the intra-operative facility allows Alder Hey’s neurosurgeons to navigate directly and microscopically to the lesion, remove it, and re-scan to ensure it has been fully removed.
Now Beth has had an operation which involved inserting special grids, containing sheets of electrodes, directly on her brain just like an internal EEG. Whilst Beth’s tumour has recurred it is not necessarily the source of the epilepsy and the grids will help to work out exactly where the seizures are coming from. Surgeons fitted the grids by performing an open craniometry – opening the skull to expose part of the brain. Following the procedure, Beth’s brain has been monitored on an epilepsy monitoring unit which will try and identify which part of the brain is responsible for the seizures. This will help the surgeons at Alder Hey to pin point exactly where the seizures are coming from and use surgery to remove the growth on Beth’s brain.
Beth said: “The staff here have been amazing. Normally I don’t really like getting the nurses helping me bathe and stuff but I don’t mind here because they make me feel comfortable. I trust them and can have a laugh with them and they do genuinely care. Everyone supports me and nothing is too much trouble. The surgeons are brilliant and have my best interests at heart. They know that I want to be independent and so this is their aim too.”
Mum Karen adds: “The staff on the ward have been wonderful. I’m a nurse but they have allowed me to just be a mum. They are always reassuring me so I don’t have to worry about anything. I feel like we are in good hands – everyday I feel safe. If we won the lottery we would choose Richard Appleton and Sasha Burn as our consultants. They are the best there is and have been fantastic.”
Beth hopes to have the operation as soon as possible saying: “I hope this operation gives me a chance to lead a normal life.”