Researchers at Cedars-Sinai have made an important discovery: some patients who are diagnosed with a serious brain disease called behavioral-variant frontotemporal dementia (bvFTD) might actually have a treatable problem instead. Their study found that a leak of cerebrospinal fluid (CSF) could be behind the symptoms in some cases.
Behavioral-variant frontotemporal dementia is a condition that affects how a person behaves and how well they can manage daily life. Patients with bvFTD often lose their sense of judgment, become socially inappropriate, and struggle to take care of everyday tasks.
Until now, this disease was thought to be untreatable. But the new research suggests that for some people, the symptoms could be caused by a CSF leak—and that means they might be treatable.
Cerebrospinal fluid is the clear, watery liquid that cushions the brain and spinal cord, protecting them from injury. If this fluid leaks into the body, the brain can sag within the skull. This sagging can cause symptoms that look very much like dementia, including changes in behavior and thinking.
The study showed that many patients with brain sagging caused by a CSF leak are never diagnosed properly. As a result, they miss out on the chance for treatment. The researchers recommend that doctors take a closer look at patients with certain signs.
They suggest asking patients if they have ever had severe headaches that get better when lying down, if they feel very sleepy even after a full night’s sleep, or if they have ever been told they have a Chiari malformation—a condition where part of the brain pushes down into the spinal canal.
Finding a CSF leak can be tricky. Sometimes, the leak comes from a tear or a cyst in the membrane surrounding the brain and spinal cord. These types of leaks can usually be seen with a special kind of scan called a CT myelogram, which uses a contrast dye to make the leak visible.
But the Cedars-Sinai team found another kind of leak that is harder to detect. In these cases, the cerebrospinal fluid leaks into a nearby vein instead of into open tissue. These leaks don’t show up on a regular CT myelogram.
To find these hidden leaks, the researchers used a more advanced type of CT scan. This scan tracks how the contrast dye moves through the body, helping to spot leaks that would otherwise be missed.
In the study, the researchers used this new imaging technique on 21 patients who had brain sagging and bvFTD-like symptoms. They found that nine of the patients had CSF-venous fistulas—small leaks where the fluid was escaping into a vein.
All nine patients had surgery to close the leaks. After the surgery, their brain sagging went away, and their symptoms completely disappeared.
The remaining 12 patients had leaks that could not be found. They received other treatments, like systems that add CSF to the body, but only three of them got better.
This research suggests that some patients who seem to have bvFTD might actually have a different, treatable condition caused by a CSF leak. By carefully checking for symptoms and using the right scanning techniques, doctors could help more patients recover fully.
The study, led by Wouter Schievink and his team, was published in Alzheimer’s & Dementia: Translational Research and Clinical Interventions.
If you care about dementia, please read studies about dietary strategies to ward off dementia, and how omega-3 fatty acids fuel your mind.
For more health information, please see recent studies about Choline deficiency linked to Alzheimer’s disease, and what to eat (and avoid) for dementia prevention.
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