Neil's Epilepsy Surgery Story

Neil was diagnosed with epilepsy at 18 months old after an episode where his father came to check on his infant son, only to find him turning blue in his cot. Whisked to hospital, Neil’s father was told just another 10 minutes later could have resulted in Neil’s death.

Neil began anti-seizure meds at four years old and experiences primarily focal seizures up to two minutes in length, although he has also experienced six tonic-clonic seizures throughout his life. Although living with epilepsy is challenging, Neil finds the stigma associated with the condition and other people’s misconceptions one of the greatest challenges.

One of the most frustrating things for Neil has been his treatment in the workplace and his experiences of job-seeking as a person living with epilepsy.

“It’s people’s reaction when you say the E word. Like it’s a horrible thing. When really, I’m just like everyone else. When I have a seizure, all I need is five minutes to come out of it and have someone talk me through it.”

Neil recalls a particular experience some time ago when he went for a job as a warranty clerk at a car dealership. The interview was going so well, that Neil felt an offer was going to be made there and then, until the final question asked by the would-be employer:

“Is there anything you would like to ask or you think I should know?”

Neil mentioned his epilepsy and says after that he felt like the employer couldn’t get him out of there fast enough.

Another time, Neil had held a role for a few years when, in his exit interview, he was informed all the admin was being relocated back to Auckland as it was a New Zealand company. Neil was told it had nothing to do with his performance in the role. However, a few weeks later, he spoke to a friend there and asked if the other admins had been made redundant. He was told no, it was only him, leaving Neil with the conclusion that it was due to his epilepsy.

A short time later, Neil was optimistic when he landed a job and his boss’s wife lived with epilepsy. Despite the expectation of a better understanding of Neil’s condition, sadly this job ended in just five weeks after Neil was told his role was being made redundant. However, the amount of work the role required made Neil sure that this wasn’t the case.

In 2012, Neil’s seizure activity intensified and he also experienced three tonic-clonic seizures in public. Fortunately, he was assisted each time – once by a police officer, another time by an off-duty nurse and the third time by a bus driver.

However, it wasn’t until reading Wally Lewis’s book, “Out of the Shadows” that Neil began looking into surgery options, which led to a two-week seizure monitoring assessment. Neil experienced one seizure whilst being monitored and was deemed eligible for surgery.

Unfortunately, Neil had just discovered his Dad, back in the U.K. was terminally ill, so made the decision not to continue with the surgery as this would have impacted his ability to travel. After Neil’s father sadly passed away in 2018, surgery plans were revisited.

In December 2018, Neil attended the Royal Brisbane and Women’s Hospital (RBWH) for seizure monitoring. This took place two weeks prior to Christmas and involved sleep deprivation to try to induce and capture seizure activity. Despite experiencing up to 10 seizures a week prior to his admission, after two weeks of hospital monitoring, no seizure activity was recorded.

A year on, Neil’s seizure activity had increased again- this time experiencing up to 30 seizures per week!

Neil says:

“I would have ten during one day, then I might have one day that was OK but the pattern continued.”

Neil went back to hospital for monitoring again in December 2019 and this time 16 seizures were recorded. Neil was finally put on the waiting list for surgery and credits one of his epilepsy nurses at the Royal Brisbane and Women’s Hospital, Angela Spencer, as being a key advocate to have him placed at the top of this list.

Prior to his epilepsy surgery, Neil underwent his first brain surgery in October 2019 to relieve an abnormal build-up of fluid in the cavities of his brain (hydrocephalus). A shunt (tube) was inserted into his brain and connected to a flexible tube placed under the skin to drain excess fluid into Neil’s chest cavity.

Then earlier this year, in April 2020, Neil had his second brain surgery in which a 7cm piece of his temporal lobe was removed, leaving a question mark shaped scar as per photograph below. The shunt line in his collarbone area was also tied off as it was thought this would no longer be needed. Future events meant this decision would have to be revised, but Neil is quick to point out he does not place blame for this: “They took a decision, and okay, it didn’t have the desired result, but it wasn’t a mistake.” His recovery went well and he was out of hospital by the end of the week. His seizure activity ceased but little did Neil know at the time that more surgery was ahead.

In July, a routine MRI revealed a bleed in the brain. Neil was given the option to stay in hospital or return the following day for another MRI. He opted to go home, on the proviso that if he had any headaches, he should call the hospital. The next day, Neil relays he woke up with his head “absolutely screaming.”

He rang the hospital and within three minutes Angela, the epilepsy nurse, instructed him to pack his bags and head back in. Neil required another surgery to drain the blood from his skull, leaving him with two burr holes on top of his head.

Four weeks later, in August, a CT scan revealed the excess blood was gone but his hydrocephalus had skyrocketed. This led to Neil’s fourth operation in September, to untie the line which they had previously tied in Neil’s major operation. Under just a local anaesthetic for the operation, Neil describes the surreal experience of feeling the surgeon tugging at his collarbone (where the shunt was tied), asking Neil what his favourite football team was and other general questions as he was doing it!

Due to the frequency of Neil’s seizures and his disappointing recent experiences with employment, but still knowing he had something to offer, Neil decided to volunteer with us at the Epilepsy Queensland office.

“You took me in, when no one else wanted me,” he heart-breakingly states.

Having that one day a week (prior to COVID-19) provided Neil with an environment where he could connect with others living with epilepsy.

Neil also really appreciates spending time with the staff at Epilepsy Queensland and says meeting team members Matt and Tania was a highlight.

The kindness and friendship shown by Tania, whose role at Epilepsy Queensland includes Volunteer Coordination, has particularly meant a lot to him.

When asked what he considers the biggest win on his epilepsy journey to date, Neil recalls how far he has come from that period earlier last year prior to his surgery, when he was experiencing up to 30 seizures a week. Up until November 2020, Neil had been seizure-free, which was huge progress. This has enabled Neil to play a much bigger part in raising his three-year-old daughter, which was something he couldn’t do before, in case of a seizure.

Unfortunately, at the time of writing this story, Neil relays he has now experienced two focal seizures and four auras. While Neil describes them as less intense than his previous seizures, he will undergo a week-long EEG monitoring in hospital to investigate, once a bed at the RBWH becomes available.

Nevertheless, Neil remains hopeful he will retain seizure control and is determined to give back. With 19 years of administration experience in the motor industry behind him, he now aspires to work in medical administration. He says his dream role would be at the Royal Brisbane and Women’s Hospital in the Neurology Department. His wonderful experiences there have left a lasting impression and he would love to convey how highly he thinks of the personnel there:

“They are all wonderful- I really can’t speak of them highly enough. I think the RBWH Neuro team is the best in the world. They have been incredible to me over the last two years –  I love them all.”

Neil would love to dispel the stigma around epilepsy and wants people to understand that epilepsy “…is just one of those things. It’s not something strange or something to be scared of.”