At Cedars-Sinai, a team of doctors led by Wouter Schievink has made a discovery that could change how some patients with dementia-like symptoms are treated.
Their research has found that certain symptoms of a condition called behavioral-variant frontotemporal dementia, or bvFTD, may actually be caused by something that is treatable—a leak of cerebrospinal fluid (CSF).
bvFTD is a serious brain condition that affects how people behave and function in everyday life. But here’s the surprising part: in some people, these same symptoms may be caused by a leak of the clear fluid that surrounds the brain and spine.
This fluid, called CSF, helps protect the brain. When it leaks, the brain can sag, leading to problems that look just like dementia.
Many people with these symptoms are misdiagnosed, and the real cause—CSF leak—is missed.
The Cedars-Sinai team believes doctors should pay closer attention to patients who have certain warning signs, like strong headaches that feel better when lying down, feeling very sleepy even after sleeping well, or having a history of Chiari malformation, a brain condition present from birth.
Finding these leaks isn’t easy. When there’s a tear or cyst, doctors can sometimes find it using a special scan called a CT myelogram, which uses contrast dye. But the researchers also found a more difficult kind of leak—called a CSF-venous fistula. This happens when the fluid leaks directly into a vein and often doesn’t show up on regular scans.
To find these tricky leaks, the researchers used a special kind of CT scan that follows the dye in real time. They tested this on 21 patients who had brain sagging and bvFTD symptoms. In nine of them, they found CSF-venous fistulas.
Here’s the most exciting part: all nine patients had surgery to close the leak, and after that, their brain sagging and dementia-like symptoms went away. Completely.
The other 12 patients in the study didn’t have a leak that could be clearly found. They received other treatments meant to help the brain sagging, but only three of them improved.
This study offers hope. It shows that some people diagnosed with bvFTD might not actually have dementia, but a treatable brain fluid leak instead. With the right tests and imaging tools, doctors might be able to help these patients recover.
The research was published in the journal Alzheimer’s & Dementia: Translational Research and Clinical Interventions. It could help many families and patients who are struggling with symptoms that look like dementia but may actually be something fixable.
If you care about dementia, please read studies about Scientists find a simple solution to fight dementia and findings of Big causes of memory loss, dementia you need to know.
For more information about dementia, please read studies about People who take high blood pressure medications have lower dementia risk and findings of Early indicators of dementia: 5 behaviour changes to look for after age 50.
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