The disability charity Shine Cymru says more has to be done to stop the misdiagnosis of hydrocephalus, a rare brain condition that can be fatal if not identified.
Hydrocephalus is often onset after a head injury and causes the build up of cerebro-spinal fluid in the skull. A healthy volume of the liquid is needed to bring nutrients to the brain, but when it fails to drain properly it can cause a number of symptoms, such as learning difficulties and memory loss.
Shine Cymru volunteer Dean Clarke first showed signs of hydrocephalus in his teens. He told CJS News: “It was difficult in my school years. I was always put down to being clumsy, being a bit slow, because I was having problems with my balance and memory.
“The teacher would tell me something and it would go in [one] ear and straight out of the other ear.”
After tests he says his neurologist initially told him nothing was wrong, but a CT scan proved otherwise. Mr Clarke’s life was saved with a shunt – a surgically implanted tube that drains away the excess fluid from his brain.
It affects every part of your life, from physical to mental, and that’s hard to cope with on a day-to-day basis
Dean Clarke, Shine Cymru volunteer
Mr Clarke added: “Hydrocephalus is very difficult to live with. You have good days and bad days. It affects every part of your life, from physical to mental, and that’s hard to cope with on a day-to-day basis.”
However, with the right management of symptoms following timely diagnosis, Mr Clarke stressed that it is possible to live a relatively normal life.
Shine Cymru support and development worker Helen Allen told us that Mr Clarke’s story is not unique, and that quick diagnosis is key to treating hydrocephalus.
However, as its symptoms are similar to other conditions, the early signs often slip under the radar: “People start having trouble with balance, getting confused, getting memory loss, or urgency to go to the toilet, and a lot of times when they go to their GP practices [they say that it is just] a sign of getting older.
“Some of our new members have explained that they’ve had a lot of misdiagnosis. Some have been described as dementia, […] a lot have said they’ve been misdiagnosed with MS, and some have even been misdiagnosed with Parkinson’s.”
Some of our new members have explained that they’ve had a lot of misdiagnosis.
Helen Allen, Shine Cymru support and development worker
Early signs include severe headaches, nausea and difficulty walking following a head injury.
These symptoms can develop over a long period of time, so Ms Allen advises anyone concerned to see a specialist as soon as possible.
Shine Cymru was at Cardiff’s University Hospital of Wales today (7th February) as part of its Hydrocephalus Awareness Week.