Elliot Webb, 24, from Sedgley, West Midlands, has spent the past decade trapped indoors, viewing the world from his iPad, as crippling headaches leave him unable to stand for more than an hour a day. He says doctors have given up on him.
A decade of suffering
At 14, Elliot began experiencing tingling in his fingers, pain in his legs and severe headaches. Scans at Birmingham Children’s Hospital in 2014 revealed Chiari malformation, where the lower part of the brain extends into the spinal canal, and syringomyelia, a rare neurological disorder involving a fluid-filled cyst in the spinal cord.
He underwent surgery to relieve pressure on his brain and spinal cord but suffered a major seizure during the operation and nearly died. His headaches initially improved but returned three weeks later. Over the next two years, he visited hospital more than 30 times, where he was repeatedly prescribed pain relief, with one doctor suggesting the symptoms could be linked to anxiety.
No answers
A specialist at King’s College Hospital later suspected a cerebrospinal fluid (CSF) leak and recommended a contrast-enhanced MRI. However, Birmingham Children’s Hospital carried out the scan without the contrast dye, and it showed no abnormalities. Elliot’s mother, Kath Webb, 47, said she was furious and complained, but the hospital said they do not usually use the dye.
Elliot missed his exams, never went to college and lost contact with friends. He spends 23 hours a day in bed because standing for even a few minutes triggers intense headaches and vomiting. In 2023, doctors suggested intracranial hypotension, often caused by a CSF leak, but his condition has continued to deteriorate.
Hopes for private care
Following further investigations in summer 2026, Elliot’s neurosurgeon told him there was nothing more they could do, unable to identify the source of a possible CSF leak or explain his low intracranial pressure. Elliot is now fundraising to see a private CSF leak specialist, with a target of £5,500.
His mother 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 Birmingham Women’s and Children’s Trust spokesperson 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 said: “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.”
