Plea for UK care for brain leak sufferers, as Ross man recovers from surgery
THE wife of a Ross-shire man who has undergone two major spinal operations in America at a cost of more than £100,000 has questioned why he and other patients could not be treated in Britain.
David Baldwin (35) flew out to Los Angeles to undergo a life-changing operation by a world-leading specialist to cure a debilitating neurological condition which has meant he has had to spend most of the last two years lying down due to the constant pain and pressure.
The first operation in June to find and fix Mr Baldwin’s cerebrospinal fluid (CSF) leak was financed by more than £60,000 raised through a public appeal launched by his wife Cerian.
It soon became apparent that Mr Baldwin was still suffering symptoms caused by another unidentified leak and he had to undergo a second six-hour operation two weeks ago. The health care costs have spiralled to £117,000 and the couple has since upped their appeal target to £90,000.
Mr Baldwin of Heights of Achterneed near Strathpeffer was discharged from the Cedars-Sinai Medical Centre in Los Angeles last Wednesday and now faces a wait to find out if the second procedure - by Dr Wouter Schievink who famously cured movie star George Clooney - has worked.
Mrs Baldwin told the Ross-shire Journal last week: “Whatever the outcome of the surgery, we have made more progress in five weeks than we did in two years back home.
“For the first time in two years we have had the knowledge, support, encouragement and caring of an expert in cerebral spinal fluid leaks. This is something that all cerebral spinal fluid leak sufferers should have access to. It shouldn’t be something where you have to scrape together £100,000 and travel halfway round the world to get. Cerebral spinal fluid leaks are not that rare just under diagnosed and widely misunderstood.
“People should be able to get the correct treatment and care within the UK. Sadly it appears yet more examples of cerebral spinal fluid leak sufferers not getting the care they needed have appeared in the press this past week.”
While Mr Baldwin has been in America it has been reported that Michelle Watt, the daughter of Scottish boxing champ Jim Watt, took her own life. It is thought that she also suffered from pain due to a CSF leak.
“This has made us even more determined to continue to progress the www.CSFleak.info website into a proper charity so that people in the UK can get the treatment and support they deserve without having to travel abroad,” said Mrs Baldwin.
Just a day after the first operation Mr Baldwin was able to sit up and begin to walk for the first time since he was struck by the condition.
However, after a few days it became apparent he had to return to hospital.
A CSF leak is the leaking of fluid out of the spine which means the brain is no longer properly supported.
Mrs Baldwin said: “Further scans were carried out and it was concluded that a second leak site was likely to be the culprit. So David underwent an extensive six-hour surgery in the thoracic spine area on July 1 and sure enough a second leak was found and fixed. Like the first leak location, this one was also caused by a bone spur. This is going to be a long recovery due to the extent of surgery but also the complexity of the brain recovering from two years of sagging within the skull. Only time will tell whether it has been fully successful.
“We’d like to take this opportunity to thank everyone for their continued donations and messages of support.
“We have now reached over £70,000 in donations which is excellent but unfortunately due to the second surgery costs have now reached over £117,000.”
