Brain condition leaves man trapped indoors for a decade

A 24-year-old man who has spent the last decade "trapped" indoors due to crippling headaches which leave him unable to stand for more than an hour a day, has said doctors have "given up" on him.

Elliot Webb from Sedgley was 14 when he began experiencing tingling in his fingers, pain in his legs and severe headaches.

Scans at Birmingham Children's Hospital in 2014 revealed he had Chiari malformation, a condition where the lower part of the brain extends into the spinal canal.

They also found he had syringomyelia, a rare neurological disorder in which a fluid-filled cyst develops within the spinal cord.

Elliot 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."

His mother, Kath Webb, said his condition had taken away his quality of life, education, social life, and said he had "no hope".

Elliot underwent surgery to relieve pressure on his brain and spinal cord, but said he suffered a major seizure during the operation and nearly died.

Kath said: "We all thought he was going to die, it was petrifying."

Although his symptoms initially improved after the surgery, 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.

"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.

A specialist at King's College Hospital later suspected he had a cerebrospinal fluid (CSF) leak, but Elliot said he had since been left without answers after doctors at Queen Elizabeth Hospital Birmingham told him there was nothing more they could do.

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," he 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 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 this summer, 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 remained 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.

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 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."

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