Elliot Webb, a 24-year-old from Sedgley in the West Midlands, has spent the past decade effectively confined indoors, observing life through his iPad screen, as relentless headaches prevent him from standing for more than an hour each day. He says doctors have "given up" on him after years of investigations failed to provide a definitive diagnosis or effective treatment.
His ordeal began at age 14 in 2014, when he first noticed tingling in his fingers, pain in his legs, and severe headaches. Scans at Birmingham Children's Hospital revealed Chiari malformation, a structural condition where the lower part of the brain extends into the spinal canal, alongside syringomyelia, a rare neurological disorder involving a fluid-filled cyst in the spinal cord.
Surgery and a Near-Fatal Seizure
Elliot underwent surgery to relieve pressure on his brain and spinal cord, but during the operation he suffered a major seizure when air became trapped around his brain. He was moved to the high dependency unit, where he remained at a 30-degree angle for several days while the air dispersed. His mother, Kath Webb, 47, recalled: "We all thought he was going to die, it was petrifying."
Initially, his symptoms improved after the operation, but within three weeks the crushing headaches returned. Over the next two years, Kath brought Elliot to hospital approximately 30 times, where he was repeatedly given pain relief and discharged without further investigation. In 2017, one doctor suggested his headaches might be linked to anxiety, but a subsequent Child and Adolescent Mental Health Services (CAMHS) assessment found no concerns. Elliot said: "It felt like they were trying to blame it on mental health and not actually investigating it – the pain wasn't normal, I couldn't go to school or stand up."
Suspected CSF Leak and Missed Scan
Later that year, a specialist at King's College Hospital in London suspected Elliot might have a cerebrospinal fluid (CSF) leak and recommended a contrast-enhanced MRI. However, Birmingham Children's Hospital carried out the scan without the contrast dye, despite the recommendation, and it revealed no abnormalities. Kath was furious: "I complained to the hospital and they said they don't usually use the dye, but that didn't make any sense." Without the dye, the scan would not have been capable of detecting a CSF leak, a crucial detail that may have delayed his diagnosis.
Elliot's condition forced him to miss school exams, abandon plans for college, and lose touch with friends. He said: "I used to love science and wanted to do something with it, but I just fell through the cracks." Since leaving school, he has spent up to 23 hours a day in bed because standing for even a few minutes triggers intense headaches and vomiting.
Continued Decline and Hospital Admissions
In 2023, doctors suggested Elliot may have intracranial hypotension, often caused by a CSF leak. His condition has since worsened, with 13 hospital admissions in 2023 due to relentless vomiting caused by pain, and a similar number in 2024. Following further investigations in the summer of 2026, his neurosurgeon told him there was "nothing more they could do," having been unable to pinpoint the source of a possible CSF leak or explain why his intracranial pressure remains so low.
Kath said: "To hear that, as a parent, is just crushing. He has no quality of life because of this." Elliot, who is single and unemployed, added: "I've had to learn to view the world from my iPad screen because of my condition. I used to get angry, frustrated and down, but now I'm just emotionally exhausted. I've kind of given up now – I can't remember certain words and some of my memories."
Fundraising for Private Specialist
Elliot is now fundraising to see a private CSF leak specialist, with a target of £5,500. Kath said: "Elliot says he has no hope, and that's gut-wrenching. He's got no friends and never had a girlfriend because of this. I just want him to be happy."
A spokesperson for Birmingham Women's and Children's Trust said: "We appreciate this must be difficult for Elliot and his family. During his time in our care, all treatment was carried out in line with clinical guidelines and following best practice. Elliot's best interests were always fully considered and remained central to all clinical decision-making."
A spokesperson for University Hospitals Birmingham added: "Our specialists continue to support Elliot in the management of his symptoms as they unfortunately do have a very significant impact on his quality of life. Elliot has received extensive and appropriate investigations, and this has included review by renowned specialists in the field and further discussion with other national experts. We will continue to do our best to support Elliot and have offered him a referral to any other UK centre for further clinical opinion should he wish."
To contribute to his fundraising campaign, visit gofundme.com/f/help-elliot-to-stand-up-for-more-than-1hr-a-day-csf-leak.
