A new study from Cedars-Sinai has brought hope to some patients who have been diagnosed with a rare form of dementia. The research found that certain people showing symptoms of behavioral-variant frontotemporal dementia (bvFTD) might not actually have this disease. Instead, their symptoms could be caused by a treatable condition—leaking spinal fluid.
Behavioral-variant frontotemporal dementia is a serious brain condition. People with bvFTD often lose control over their actions and emotions. They may behave in ways that are socially inappropriate, struggle with decision-making, or lose interest in their usual activities. Over time, they may also have trouble taking care of themselves and doing everyday tasks.
However, the Cedars-Sinai team discovered that in some cases, the real cause of these symptoms might not be damage to the brain itself. Instead, it might be something simpler and more treatable: a leak of cerebrospinal fluid (CSF).
Cerebrospinal fluid is a clear liquid that surrounds the brain and spinal cord. It acts like a cushion, protecting these delicate parts of the body from harm. When CSF leaks out of its normal space, the brain can begin to sag downward inside the skull. This brain sagging can cause symptoms that look a lot like dementia.
The researchers explained that these leaks often go unnoticed. People with CSF leaks might visit many doctors before anyone realizes what’s wrong. To help identify these cases, the study’s authors urge doctors to pay close attention to certain clues.
For example, a person might report strong headaches that get better when they lie down, or they may feel very sleepy during the day even if they sleep well at night. Another sign is a past diagnosis of a Chiari malformation, a condition where part of the brain extends into the spinal canal.
Even when doctors suspect a CSF leak, finding exactly where the leak is happening can be tricky. Usually, imaging tests like a CT myelogram (a special scan that uses contrast dye to see the spinal fluid) can show a tear or hole in the lining that surrounds the brain and spinal cord.
But the Cedars-Sinai team discovered a different kind of leak that is harder to spot—one where the fluid drains into a nearby vein instead of into open space.
To detect this kind of leak, technicians must use a special kind of CT scan that tracks the movement of the contrast dye while it’s flowing through the spinal fluid. In the study, this method was used on 21 patients who had brain sagging and symptoms that looked like bvFTD. The team found CSF-venous fistulas—tiny leaks into veins—in nine of those patients.
All nine of these patients had surgery to close the fistulas. The results were remarkable: after surgery, their brains stopped sagging, and their dementia-like symptoms completely disappeared.
For the other 12 patients in the study, the location of their CSF leaks couldn’t be found. These patients were given general treatments to help ease brain sagging. One treatment involved using a device to slowly pump more CSF into the body. Only three of these 12 people felt any real improvement.
This research suggests that some people who are thought to have an untreatable brain disease may instead have a problem that can be fixed. With better attention to symptoms and improved imaging techniques, doctors might be able to identify more patients whose condition is actually due to a CSF leak.
The study, led by Dr. Wouter Schievink, was published in Alzheimer’s & Dementia: Translational Research and Clinical Interventions. It gives hope that, in some cases, a serious diagnosis like bvFTD might not be the end—but rather the beginning of a successful recovery.
If you care about dementia, please read studies about low choline intake linked to higher dementia risk, and how eating nuts can affect your cognitive ability.
For more information about brain health, please see recent studies that blueberry supplements may prevent cognitive decline, and results showing higher magnesium intake could help benefit brain health.
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