David Baldwin is a 37 year old man from Ross-shire. Based on appearances, he should be living a normal, healthy life. Appearances can, however, be deceiving. David suffers from Cerebrospinal fluid leak (or CSF leak). To learn more about David’s story and CSF leak keep reading, or follow his story here.
White-water kayaking used to be one of David’s favorite pastimes. Now he can’t stand or sit up. Excruciating pain keeps him more or less bedridden. Even laughing and sneezing are now things to be cautious with. Either one of these simple actions could be major health risks for David.
CSF leak affects about one in 3,300 people per year in the United Kingdom.
It occurs when fluid leaks from the membranes that envelop the brain and spinal cord. The basic effect is that it leaves the brain less supported than it needs to be. Resulting symptoms can be dramatic and catastrophic. CSF leak may be caused by trauma or surgery, but it is often difficult to detect. To learn more about this rare disorder, click here.
David’s experiences with CSF began when he was kayaking. He reports simply that he didn’t feel well. Shortness of breath, dizziness, heart palpitations. Unsure what was wrong, David went home to sleep it off.
The next morning he experienced excruciating head pain. Nothing he took to ease it would help. The pain continued to get worse. By the end of the day David was unable to stand due to the pain. He was forced to crawl between his own bedroom and bathroom.
His condition worsened as the days went on. His vision began to blur. David began to experience loss of hearing. Constant tinnitus came next. Difficulty concentrating and inhibited memory followed shortly after. The strangest symptom David remembers is a feeling that his brain was being pulled down his spine. He describes it as an “unrelenting pressure,”– a feeling as if he had a pile of bricks pressing down on his head, pushing down his brain. David says it is nearly impossible to explain to someone that hasn’t experienced it.
Doctors have thus far been unsuccessful in completely treating David’s CSF leak. The leak is thought to be somewhere in David’s upper spine. Simply knowing the general locations hasn’t been enough to help. David has even received treatment by Dr. Wouter Schievink – an expert in the field who treated George Clooney when he had complications with a CSF leak.
Despite treatment, David is still forced to spend most of his time lying down. He’s lost his job. In nearly three years, David has only been able to leave home 15 times at most. A good portions of those trips out were for treatment or examinations. Stretchers and rides in ambulances have become his normal mode of transportation.
When he’s lying down, David says he doesn’t experience much or any of the symptoms of CSF leak. As soon as he stands up, however, it comes back full force. Yet, David is one of the lucky people with CSF leak. He was able to find a diagnosis in as little as three months. Other people in his country face an average wait of 13 months before the source of their trouble is determined.
James Walkden is a neurosurgeon involved in David’s ongoing treatment. He acknowledges that there is much work needed to reach a better understanding and treatment for CSF Leak. The condition is only recognized by a small group of specialists. In the meantime, endless visits to medical professionals can result in nearly infinite delays and misdiagnoses. This only further complicates the patient’s situation and treatment.
It’s not impossible to treat CSF leak, but it can be a long and difficult road given the current lack of knowledge on the subject. Dr. Walkden hopes that in the future awareness will spread, and it will be more common to get patients the help they need early.