Tilly Jones, 33, who has suffered from epilepsy since 2017, is set to undergo invasive brain surgery after years of seizures that have turned her life upside down. The procedure will involve drilling 15 screws into her skull before removing part of her brain.
Jones, from Stamford, was diagnosed with epilepsy in April 2017 after months of suffering from what she now knows as 'focal seizures'. Initially, her GP allegedly implied she had been taking recreational drugs and dismissed her symptoms as panic attacks.
"I nearly lost it," Jones recalled. "Out of all my friends, brothers, sisters, I'm the least wild one." She added: "That really upset me."
Seizures and Diagnosis
Weeks later, she had her first tonic-clonic seizure, waking up alone having wet the bed, with blood on her pillow and face from chewing her tongue. She spent a week in hospital but returned to work immediately, only to have another seizure a week later. Her boyfriend caught it on camera, leading to her epilepsy diagnosis.
Since then, Jones has suffered seizures in supermarkets, film sets, the back of Ubers, and on dates. One man she was seeing once shouted at her: "You're really going to struggle to find someone who can deal with your issues."
Life with Epilepsy
Jones, who previously worked in the film industry on productions like Killing Eve, Meg 2, and Better Man, had to quit her job two years ago due to regular seizures and the loss of her driving license. She now lives on benefits and cannot be left alone for long.
Her partner, Tom, described a recent seizure: "She had one a couple of weeks ago where she was struggling to breathe, and started to go blue, purple. They are the really terrifying ones." If a seizure lasts over five minutes, an ambulance is called; Jones once had one lasting 20 minutes.
Jones also experiences memory loss, which she calls her most "heartbreaking" symptom. On a recent holiday, she burst into tears when she couldn't remember being there before, telling her mum: "I don't remember being here. I don't… it's not there. And I find that absolutely horrible."
Brain Surgery
After trying eight different medications, none of which worked, Jones is now preparing for brain surgery. She will shave her head and have 15 holes drilled into her skull in the first stage to pinpoint the malfunctioning part. In the second stage, she said: "I'll then have a second surgery where they chop it out."
Despite her fear, Jones is "excited" about the possibility of being seizure-free, but she is also terrified. "I was awake all night recently because I was thinking of the letter I'm going to write to my friends and family because what if I wake up brain damaged?" She added: "What if I don't wake up? But then the thing is also with a seizure, which I don't think people realise is, is every time you have one, you are causing damage to your brain. So I am going for it."
GoFundMe Support
The surgery may not happen until 2027 because the NHS equipment is currently stuck in the US. In the meantime, her friend Sophie has set up a GoFundMe page, which has already raised over £7,000. The funds will cover specialist treatment, therapeutic support, help with daily life, post-surgery funds, and egg freezing, as Jones may need years to wean off medication before considering conception.
Jones said: "Sophie is bloody wonderful, and I'm totally overwhelmed by the response."
