In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Rhys, from Newport in South Wales, was just eight when he was diagnosed with a grade 1 pilocytic astrocytoma in 1998. It was discovered by a CT scan after an eye test picked up a swelling behind his eyes. Despite having his tumour removed, Rhys has since encountered complications including two bouts of meningitis. Almost two decades later, in 2016, Rhys was diagnosed with a neurodegenerative condition called superficial siderosis; a slow bleed from his brain as a result of his initial surgery. Now 33, he is sharing his story to raise awareness of the lack of options for brain tumour patients when it comes to treatment.
Rhys tells his story…
When I was eight years old in 1998 I was diagnosed with a low-grade pilocytic astrocytoma after experiencing persistent headaches, nausea and extreme fatigue. I began vomiting and was off school for a month. Doctors thought it could be a virus but after no improvement and a gradual deterioration of my eyesight, the GP suggested I get my eyes checked.
The optician noticed a swelling behind one of my eyes known as papilledema and I was referred to Royal Gwent Hospital in Newport for a CT scan which found a mass at the back of my brain.
It was unbelievable, up until this point I had never been poorly. I was incredibly active and attended Cardiff City Soccer School where I played goalkeeper for the club.
The day after I was diagnosed, I had surgery to remove the mass which had formed at the back of my head. Despite contracting meningitis shortly after surgery, I needed no further treatment as the tumour was low-grade. However, two years later I needed a VP shunt fitted due to developing hydrocephalus - a build-up of cerebrospinal fluid (CSF) in my head which was causing excessive pressure on my brain. If left untreated it can be fatal.
Over the next few years, I encountered complications with the shunt and required multiple surgeries to unblock the device. My life had been all things football, but due to the fragility of my head after the numerous surgeries, my dream of becoming a professional footballer took a swerve. My dad bought me a guitar and so music became my life.
I pursued a degree in music and played in various bands, but whilst studying at university in 2009, I developed meningitis. I’d missed so much of my studies, I decided to drop out of the course and went full time in my job in retail.
Two years later I began to experience minor hearing loss and tinnitus, which was attributed to a second bout of meningitis.
In August 2015, not long after I had started a new job in car insurance whilst I continued to play in bands, I found myself in surgery once again. I had woken up in the night with screeching in my right ear, and a popped sensation. Similar to what people might experience during take-off on an aeroplane but nothing could stop this feeling, not even yawning.
An audiologist confirmed further hearing loss. I attended A&E and whilst in the assessment unit my shunt suddenly blocked, the first time since late 2002. The sudden hearing loss meant I could no longer play in a band environment, so I resorted to playing and singing with my acoustic guitar, which didn’t last long either.
“The pain in my head became more frequent and severe. I felt dizzy most of the time. I struggled to stay upright for long periods of time which meant I had vast periods out of work.”
I was in and out of A&E. No one could tell me the cause of my continuing symptoms. CT scans showed no tumour growth, an ENT specialist couldn’t see anything of concern and the shunt seemed to be working fine.
I was now completely deaf in one ear and after a lumbar puncture in 2016 I was finally given the diagnosis of superficial siderosis. It is a disorder that develops over time. Long-term bleeding into your central nervous system (CNS) overwhelms the body’s capability to remove the full blood product, leaving neuro toxic free iron molecules (from the blood) to circulate the cerebrospinal fluid. In my case, a side effect of a slow bleed from initial brain surgery from when I was eight. I was now 26.
I was told I had been living with this rare condition for the past 18 years. I had no idea, no one did because it was - and still is - considered uncommon and slow developing side effect of trauma to the brain; in my case surgery. I have since had further surgery to close the cavity at the back of my head that was left open from the tumour resection, and I’ve also had the shunt removed.
I’m glad I had surgery to remove the tumour, however I think it’s important to let people know that as with most treatment for brain tumours, there are risks and life-changing side effects. In my case, my cognition is intact however I live with physical effects such as fatigue, issues with my heart rate and brain zaps – little shocks from the back of my head which radiate to my eyes. My autonomic nervous system (ANS) is also compromised which means that my lower body doesn’t perspire, and my upper body compensates for this. I’m profoundly deaf and have recently had a cochlear implant fitted, which has enabled me to hear again for the first time in over five years. I attend neuro-physiotherapy every week which keeps my mobility issues at bay, having previously been wheelchair bound for a few years. Managing superficial siderosis is a full-time job.
There’s only so much that doctors know and that’s down to research into the disease, which includes the long-term side effects of current and past treatment.
As a result of being told I have this neurodegenerative condition, I know that other patients may suffer life-changing injuries as a result of the tumour itself. I feel like I must advocate for myself and other people who are diagnosed. I want people to know that they can and should be part of the decision-making process when it comes to their treatment which is why I am supporting Brain Tumour Research so we can get more funding into brain tumours.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure