Baffling symptoms
Estate agent Daniel, who’s 33 and lives in Haverfordwest in south west Wales, said: “I was in agony. The pain was in my shoulder and down the left side of my back. Paracetamol and Ibuprofen combined were no help and I only found a small amount of comfort in raising my arm above my head. Not great.
“I tend to avoid bothering the doctors and will always self-medicate if I can. In fact, it had got to the point where I had moved house a few years previously so, to get seen by a doctor, I first had to sign up with my nearest practice.”
Daniel finally saw his GP on 16 October and was prescribed stronger painkillers for a possible trapped nerve. But when it didn’t get better, he made another appointment. Six more appointments later, he had been prescribed more painkillers, had a blood test, an ECG and a chest x-ray for a suspected punctured lung. All the results came back as normal. It was baffling.
Friday the 13th
Daniel’s symptoms got worse. He started to feel unbalanced, sick and dizzy, and had pressure headaches in the mornings. Back at the doctors’ again on 18 November, Daniel explained all this and added that now his eyesight was in and out of focus, he was exhausted and believed he’d experienced his first seizure. He was referred for an urgent CT scan which took place three and a half weeks later.
Daniel explains: “On a Friday the 13th, of all days, I went to my local hospital for a CT scan and got sent away to wait to hear from my doctor. I felt reasonably ok and went to buy Christmas presents at the nearby shopping centre.
“But on my way home, my doctor called me. I knew it must be bad news as it had been less than an hour since my scan. My doctor explained that the scan had found something and I needed to go right away to my local Accident and Emergency department for the full results.”
As expected, A&E was busy, but Daniel explained to reception that he’d been told he needed to be seen straight away. After he’d been waiting for some time, he phoned his GP surgery and they contacted A&E to explain the urgency of his situation. But he still had to wait.
Daniel said: “Fast forward four hours and they called me through. I was told I had a brain tumour and needed emergency surgery. The tumour was about 6cm by 3cm and on the back of my head.”
Daniel was in shock. But surgery was scheduled for four days later at Cardiff University Hospital. It was Tuesday 17th December – a date he won’t forget.
About this type of brain tumour
I definitely tried to self-medicate for a while before seeing the doctors. My biggest regret from the whole experience is putting that off. I feel extremely lucky it was as swift as it was and not cancer.
Daniel Jones
Tests showed that Daniel had a grade 1 haemangioblastoma. This is a rare low-grade type of brain tumour that is most common in people aged between 20 and 40. It’s slow growing and doesn’t usually spread to other parts of the brain. However, it can press on other parts of the brain, stopping that part of the brain from working normally.
It develops from blood vessel cells and is typically found in the cerebellum – the area involved in coordinating movement and balance. However, it can also grow on the brain stem, peripheral nerves, retina and spinal cord. Symptoms vary depending on where the tumour is positioned.
In Daniel’s case, it was at the back of his brain and it blocked the cerebrospinal fluid (CSF) from draining away. When CSF builds up inside the skull it causes intra-cranial pressure – pressure inside the head. This is what can cause headaches, sickness, blurred vision and loss of co-ordination or weakness in the limbs.
The tumour may also produce a hormone called erythropoietin which stimulates red blood cell production in the bone marrow. This can mean that some people can have a higher than normal number of red blood cells.
Recovery
Daniel was relieved to hear that surgeons thought they had been able to remove all of the tumour and follow up scans confirmed this. He was back on the recovery ward by the afternoon and then free to go home.
Daniel said: “Amazingly, I didn’t need any pain relief post-surgery. My recovery was quick and nearly all the symptoms I’d had disappeared almost instantly right from waking from surgery. The only issue was my balance which took a few days to get back to normal.”
Asked what he would have done differently, with hindsight, Daniel said: “I definitely tried to self-medicate for a while before seeing the doctors. My biggest regret from the whole experience is putting that off. I feel extremely lucky it was as swift as it was and not cancer.
“Even though I went to my doctors’ many times. I commend my surgery for the availability of appointments and the time they took on each one. Once I started going to the doctors I felt well cared for. Then it only took six days from brain scan to surgery and being sent home. So I feel very lucky.”
Daniel is sharing his story to thank the NHS and to help raise awareness of some of the less common signs and symptoms of brain tumours. He wants to encourage others to ‘bother’ their doctor if symptoms are unusual for them.