Life Stories

  I discovered that I had a brain tumour on 2nd December 2006, 13 days after returning home from a year away travelling. I was 23. I had no previous symptoms and I presented with mal grand seizures after experiencing confusion and unable finish sentences. For 2 years I was on ‘watch and wait’ then […]

  I noticed that I’d lost some of my hearing in 2005, and after various hearing tests, I was referred for an MRI. They’d noticed a very small anomaly in my scan, apparently a birth defect! After 6 monthly scans until 2012, I was referred to neurology, and shortly after was told that I had […]

Hello all – my name is Pam  and I thought this important to do for two reasons ; I am a young 62 year old woman who had a 4th ventricle ependymoma – (usually men, 40’s and in the spine!  I’m so lucky! I am from the U.S. and Linda has made it so nice […]

My name is Wendy, and I was diagnosed with a grade 2 diffuse astrocytoma in February this year (2017) after a grand mal seizure. Previously I had experienced weakness in my right foot and leg but didn’t think much about it – eventually I went to the GP when I’d noticed a foot drop. I […]

Hi, my name is Pippa. On 29th of January 2017 my husband came up to bed to find me having a seizure. He tried to wake me up but I wasn’t responding. He phoned an ambulance, and I had several more severe seizures in the ambulance. I was put in an induced coma to calm […]

My name is Jo Armstrong, I am 36 years old and in November 2016 I underwent an Endoscopic Third Ventriculostomy (ETV) to treat hydrocephalus that had occurred as a result of an intraventricular grade 1 neuronal-glial tumour. I shall never know conclusively but it is quite probable that the tumour and resulting hydrocephalus had been […]

My name is Vanessa and I’m married with 3 children. In February 2016 when I was 40 years old, I was diagnosed with a Grade 2 Diffuse Astrocytoma. The only reason why I went to the doctors was because my very close friend and neighbour had just been diagnosed with a GBM and I was […]