'I've been trapped indoors for a decade at 24 - doctors have given up'

'I've been trapped indoors for a decade at 24 - doctors have given up' Elliot Webb was 14 when he started having health problems A 24-year-old has spent the past decade “trapped” indoors, “viewing the world from (his) iPad”. He said crippling headaches leave him unable to stand for more than an hour a day and claimed doctors had “given up” on him. Elliot Webb, from Sedgley, West Midlands, was 14 when he began experiencing tingling in his fingers, pain in his legs and severe headaches. Scans in 2014 at Birmingham Children’s Hospital revealed he had Chiari malformation – a condition where the lower part of the brain extends into the spinal canal – alongside syringomyelia, a rare neurological disorder in which a fluid-filled cyst develops within the spinal cord. He underwent surgery to relieve pressure on his brain and spinal cord, but said he suffered a major seizure during the operation and nearly died. Although his symptoms initially improved, his crippling headaches returned three weeks later. Because of the pain, he said he visited hospital more than 30 times over two years, where he was repeatedly prescribed pain relief, with one doctor even “dismissing” his symptoms, suggesting they could be linked to anxiety. A specialist at King’s College Hospital later suspected he had a cerebrospinal fluid (CSF) leak, but Elliot said he has since been left without answers after doctors at Queen Elizabeth Hospital Birmingham told him there was nothing more they could do. Elliot’s mother, Kath Webb, 47, said his condition has taken away his quality of life, education, social life and he has “no hope”. Elliot, who is single and unemployed, said: “I’ve had to learn to view the world from my iPad screen because of my condition. I used to get angry, frustrated and dead 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.” At the age of 14, in 2014, Elliot began suffering from tingling in his fingers and pain in his legs and head, as if “something was pushing” on his brain. He was later diagnosed with Chiari malformation and syringomyelia. “Doctors told me that when you Google the condition it says it can lead to internal decapitation, but that’s only in some cases where they have extreme conditions too – they said it won’t happen to me,” Elliot added. A few weeks later, Elliot underwent surgery to relieve pressure on his brainstem and spinal cord, but said he suffered a major seizure when air became trapped around his brain. He was transferred to the high dependency unit, where he remained at a 30-degree angle while the air dispersed. His mother, Kath, said: “We all thought he was going to die, it was petrifying.” After 10 days in hospital, Elliot was discharged and he said his headaches began to ease. But, around three weeks later, he said his “crushing” headaches returned. Kath took him back to Birmingham Children’s Hospital, where she said he was given morphine before being discharged without doctors investigating the cause of his headaches. Over the next two years, she said she took Elliot to hospital around 30 times, where he was repeatedly given pain relief before being sent home. In 2017, one doctor suggested Elliot’s headaches could be linked to anxiety, but he said a later Child and Adolescent Mental Health Services (CAMHS) assessment found no concerns. “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,” Elliot added. Later that year, Kath took Elliot to King’s College Hospital in London, where she said a doctor suspected he could have a cerebrospinal fluid (CSF) leak and recommended a contrast-enhanced MRI. Kath said Birmingham Children’s Hospital later carried out the scan without the contrast dye, despite the recommendation, and it showed no abnormalities. “I was furious,” Kath explained. “I complained to the hospital and they said they don’t usually use the dye, but that didn’t make any sense.” The scan found nothing of concern, but Kath believes that without the contrast dye it would not have been capable of detecting a CSF leak. Elliot said: “The longer leaks go undetected, the worse the situation can become. I just wanted to be able to stand up like a normal person, even if it’s only for half a day… I’m trapped inside.” Unable to attend school because of the pain, Elliot missed his exams, never went to 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,” Elliot added. After being discharged from Birmingham Children’s Hospital at the age of 17, Elliot continued attending the Queen Elizabeth Hospital, but still had no answers. Since leaving school, Elliot said he has spent 23 hours a day in bed because standing for even a few minutes triggers intense headaches and vomiting. In 2023, he said doctors suggested he may have intracranial hypotension, often caused by a CSF leak. Since then, his condition has continued to deteriorate. He said he was admitted to hospital 13 times in 2023 with “relentless” vomiting caused by the pain and a similar number of times in 2024. Following further investigations in the summer of 2026, Elliot said his neurosurgeon told him there was “nothing more they could do”, having been unable to identify the source of a possible CSF leak or explain why his intracranial pressure remains so low. “To hear that, as a parent, is just crushing. He has no quality of life because of this,” Kath explained. Elliot is now fundraising to see a private CSF leak specialist, with a target of £5,500. Looking ahead, 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 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.”