Elliot Webb, 24, has spent ten years largely confined by severe headaches and neurological symptoms after being diagnosed with Chiari malformation and syringomyelia in 2014. Surgery briefly helped but complications and recurrent pain left him bedbound and unable to stand for long due to suspected intracranial hypotension and a possible CSF leak. NHS teams have conducted extensive investigations but have been unable to locate a definitive leak; Elliot is fundraising to see a private specialist. His condition has cost him education, friendships and a normal social life.
24-Year-Old Left Largely Bedbound for a Decade After Chiari Malformation and Suspected CSF Leak
Brain condition leaves man trapped indoors for a decade
A 24-year-old man says he has spent the past ten years largely confined to his home by relentless headaches and neurological symptoms that now leave him unable to stand for more than an hour a day. Elliot Webb of Sedgley first developed tingling in his fingers, leg pain and severe headaches at age 14.
Diagnoses and Early Treatment
Scans at Birmingham Children’s Hospital in 2014 revealed a Chiari malformation — where the lower part of the brain extends into the spinal canal — and syringomyelia, a condition in which a fluid-filled cyst forms within the spinal cord. Elliot underwent surgery intended to relieve pressure on his brain and spinal cord, but he suffered a major seizure during the operation and nearly died.
"We all thought he was going to die, it was petrifying," said his mother, Kath Webb.
Symptoms Persist
Although Elliot initially improved after surgery, crippling headaches returned three weeks later. He reports more than 30 hospital visits over two years and around 13 admissions in both 2023 and 2024 for relentless vomiting and pain. Standing for even a few minutes often triggers intense headaches and vomiting; he now spends about 23 hours a day in bed.
Possible CSF Leak and Intracranial Hypotension
Specialists at King’s College Hospital later raised the possibility of a cerebrospinal fluid (CSF) leak and intracranial hypotension (low pressure inside the skull). Subsequent investigations at Queen Elizabeth Hospital Birmingham and other NHS centres were unable to locate a definitive leak or explain why Elliot’s intracranial pressure remained low. He says he has been told there is "nothing more they can do," and has since begun fundraising to see a private CSF leak specialist.
Impact on Life and Family
Because of his condition Elliot missed school exams, did not attend college and lost contact with friends. "I used to love science and wanted to do something with it, but I just fell through the cracks," he said. His mother described the situation as devastating: "Elliot says he has no hope... I just want him to be happy."
Responses From Hospitals
Birmingham Women’s and Children’s NHS Foundation Trust: "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."
University Hospitals Birmingham: "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."
Elliot and his family are now seeking private specialist input to try to identify a treatable cause and improve his quality of life.
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