Stephen's marathon run a year after brain surgery

BROADCAST market analyst Stephen Barrett, whose parents live in Belmullet, plans to draw a line under a difficult year by taking part in the London Marathon on Sunday (April 23).

Stephen (41), who lives in London with his wife Laura, will be raising money for the National Brain Appeal, the charity that raises vital funds for the National Hospital for Neurology and Neurosurgery in Queen Square, a specialist centre for diseases of the brain, spine and nervous system.

Stephen had to undergo major brain surgery at the hospital in December 2015. Some weeks earlier he had experienced a sudden pain in the middle of his head, like being hit with a massive force. He was standing on the platform at London’s Finsbury Park Station at the time.

Stephen recalls: 'It started as a pulsing sensation and very quickly became like a jack hammer pounding away in my head.'

Not knowing what to do, and due to meet friends, Stephen attempted to carry on his journey. The sensation passed after about an hour.

This had happened to Stephen once before, when he was 23. Because it passed both times, Stephen didn’t think to consult his doctor. However, after the second episode he started to experience other symptoms - his head would throb with pain when he tried to exercise and also if he carried heavy items such as shopping.

He also noticed that he struggled to think clearly. Laura noticed issues with Stephen’s concentration and memory.

Describing the sensation, Stephen said: 'It was like every thought and perception had to go through the middle of my brain. Thinking became really constricted. Looking back, I think I had been experiencing these symptoms to some degree all my life. Because it was my ‘normal’ it was hard to know that this actually was not normal.'

When Laura returned from a business trip to find Stephen experiencing another sudden headache, she insisted he went to A&E. A very switched-on doctor suspected something serious when Stephen explained that the headaches were brought on by exertion and arranged for him to have some brain scans.

It was obvious from the scans that there was something wrong with Stephen’s brain that needed urgent attention but could not be managed in A&E. The doctor immediately referred Stephen to the National Hospital for Neurology and Neurosurgery in Queen Square.

He had a colloid cyst, a rare benign growth, in the middle of his brain, in the third ventricle. The brain has four ventricles that are filled with fluid to help protect it. In Stephen’s case, the cyst was preventing fluid draining from the ventricle into his spine. Fluid should be able to move freely around the ventricles and the spine. Although colloid cysts are not cancerous, they can be life-threatening. The neurosurgeons at the National Hospital were amazed that Stephen was even conscious when they saw the degree of fluid build-up and pressure on his brain on the scans.

 

Shock

Given the seriousness of the situation, Stephen contacted his sister Gabrielle knowing that his parents, Richard and Mary Barrett, were staying with her at the time in Trim, Co. Meath. She immediately booked flights for her and her parents to fly to London.

Stephen’s mother, Mary Barrett, said: 'As a mother, you want your children to be healthy and happy. When I heard that Stephen was going to have an operation on his brain I was in total shock. All I knew is that we needed to get to the hospital as soon as possible to be there with him.'

Stephen’s neurosurgeons told him that his condition was rare, affecting just two per one million people each year. He had to undergo lots of tests and detailed magnetic resonance imaging (MRI) scans so that they could plan what to do with the cyst. He was given the option of surgery to remove it, surgery to insert a shunt to drain the fluid from the ventricle it was blocking, or to monitor it with the caveat that he had to avoid all forms of exercise and exertion. Stephen chose to have surgery to remove the colloid cyst. This went ahead on the December 1, 2015. His parents, wife Laura and siblings were at the hospital anxiously waiting to hear how the operation went.

Mary said: 'We knew that an operation like this was complicated and would take time, but the minutes felt like hours. We had complete faith in the surgeons, but that didn’t help the anxiety we felt while we were waiting for him to come back to the ward.'

His neurosurgeons made an incision from the top of his head to his right ear and temporarily removed a small piece of his skull to access his brain. The surgery took several hours and they managed to remove almost all of the cyst. When he woke up after the operation, Stephen described a feeling of expansiveness in his head. He felt like a different person. It dawned on him that so many things he had been struggling with were side-effects caused by the cyst.

He said: 'Everything felt different, how I felt when I walked and talked. It was like I now had a wide-screen, high-definition brain. So many things that had been causing me concern for years were a result of the colloid cyst. I thought the problems I was having, such as back pain, headaches and problems concentrating, were down to the ageing process. I was delighted to realise that they weren’t. It’s very hard to explain but I know now that the blockage in my brain caused by the cyst was producing physical sensations of compressing my experience of thought and movement.'

 

Celebration

 

When they knew that Stephen was okay, Richard and Mary Barrett, who have five sons and one daughter, went up to Leeds to visit Stephen’s brother Paul.

It was Mary’s birthday while they were there. She wanted a modest celebration, given what they’d all been going through as family, so they had takeaway fish and chips. They flew back to Mayo the next day, only to have to return to London two weeks later when things took a frightening turn for their son.

Stephen had been discharged home three days after the operation, but unfortunately found himself back in the hospital after experiencing complications with cerebrospinal fluid (CSF) leaking from the wound and post-operative meningitis. He returned to the operating theatre four more times so the surgical team could try to tackle the infection and attempt to deal with the unexpected behaviour of the CSF, which still failed to drain normally.

He spent two weeks with an external drain as the surgeons hoped it would settle down. When it didn't they opted for a permanent shunt, which was inserted under his skin so the CSF could drain away from his brain into his abdomen.

Stephen spent Christmas in hospital. His parents, wife Laura, and his siblings visited every day. He was finally discharged home on January 7, 2016. He was quite weak and needed to sleep a lot, but he slowly began to recover. It was July before he returned to work, initially part-time. He recalls: 'I was happy to go back to work but I did find it very tiring and disorientating at first. My colleagues were very understanding.'

The whole period was terrifying for Stephen’s wife Laura and his family. He said: 'I was out of it for a lot of the time but I’m very aware now how scary it was for them all to witness. I’m sorry they had to go through that and I’m pleased that we can put it all behind us now.'

Running a marathon had never previously appealed to Stephen but he wanted to raise money for the National Brain Appeal, the charity that supports the National Hospital. He said: 'The medical care I received from the day I walked into my local A&E and at the National Hospital couldn’t possibly have been any better. To have such a specialist centre like the National in London is so important. You never know when a thing like this may happen. We need to support it so it can continue to help people in need. To say I am grateful to all of the nurses, doctors and surgeons involved in my care is such an understatement. They are all, without exception, amazing. I owe them everything. Running the marathon is the least that I can do.'

Stephen’s wife Laura, his five siblings and their families plan to be there to cheer him on, while his parents will be in Belmullet watching the marathon on TV in the hope of spotting their son among the thousands of runners. To support him, go to: https://www.justgiving.com/fundraising/hurryupstephen.