Annabel, Hertfordshire

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Jasper’s symptoms began in late 2008.  Initially we were completely unaware of what we were dealing with, despite his younger cousin having had emergency surgery to save his life from a brain-stem bleed.  At the time, we were not aware of the familial form of cavernomas, and Jasper’s symptoms were vague to begin with – a ‘tingly eye’, and a ‘weird feeling’ in his throat.  As his symptoms grew we managed to video an episode and my GP swiftly referred us to the John Radcliffe hospital.  Jasper was scheduled for an MRI in March 2009, and we were given the results immediately, confirming that Jasper had several cavernomas, in particular a 4.5cm one in his right temporal lobe, which they suspected was causing his seizures.  His seizures continued to worsen, culminating in a trip to A&E after a prolonged episode of vomiting and facial palsy.  He was transferred to the Radcliffe and monitored, at which point we decided surgery was our best option.img_7622

Jasper had surgery in September 2009 at the Radcliffe.  Within a week he was discharged and after a short spell of home-schooling, was back at school after the October half term.  He had a few seizure episodes in the first few weeks after his operation, but these decreased significantly within a few months.  He continued with his medication (Keppra) for about a year.img_7621

Next weekend marks 7 years since Jasper’s surgery. Now he is studying for his GCSE’s and will be heading to Borneo next summer to take part in a 3 week World Challenge.  He remains seizure-free and medication-free.  He has decided himself that he doesn’t wish to have regular scans, and we see the neurosurgeon every 2 years.  He is a bright, thoughtful, inquisitive young man who hopes to work in the film industry and apart from his scar, mostly hidden by his hair, it would be impossible to tell that he has had any health issues, let alone brain surgery.

Meanwhile, his 12 year old sister is currently on the waiting list at GOSH for surgery to remove a cavernoma from her left temporal lobe.

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