A groundbreaking study from Cedars-Sinai has uncovered a surprising cause behind some cases of behavioral-variant frontotemporal dementia (bvFTD), a severe form of dementia that affects behavior and personality.
Researchers found that some patients diagnosed with this condition may actually have a treatable problem: a cerebrospinal fluid (CSF) leak.
Cerebrospinal fluid surrounds and protects the brain and spinal cord. But when it leaks, the brain can begin to sag inside the skull, leading to symptoms that look just like dementia.
These symptoms include memory problems, changes in personality, and difficulty with thinking clearly. Unfortunately, many CSF leaks go unnoticed during routine medical exams, and the condition can be misdiagnosed as an untreatable brain disease.
The Cedars-Sinai team urges doctors to take a closer look at certain warning signs. For example, patients who have severe headaches that improve when they lie down, extreme tiredness despite plenty of rest, or who were previously told they had Chiari malformations might actually have a CSF leak.
Traditionally, doctors use CT myelogram scans to detect these leaks. But the study found that standard imaging can miss a specific type of leak called a CSF-venous fistula, where the fluid drains directly into veins. To solve this problem, researchers used a special type of CT scan that follows the movement of a contrast dye through the spinal fluid.
In a group of 21 patients showing both brain sagging and symptoms of bvFTD, the researchers found CSF-venous fistulas in nine patients using this advanced imaging method. All nine underwent surgery to seal the leaks.
The result was remarkable: each of them had a full reversal of brain sagging and dementia-like symptoms. Their thinking abilities, mood, and behavior returned to normal.
For the remaining 12 patients, no clear source of the leak was found. Doctors used general, non-targeted treatments to try to relieve brain sagging. Only three of those patients experienced symptom relief, showing how important it is to find the exact location of a CSF leak for treatment to work.
This research is a major step forward. It shows that some people diagnosed with frontotemporal dementia may not have degenerative brain disease at all. Instead, they may have a condition that can be treated—and even reversed—with surgery.
The study’s authors hope these findings will help doctors better diagnose and treat patients who are misdiagnosed with dementia. Using more advanced imaging and looking for specific symptoms could lead to life-changing recoveries.
Published in the journal Alzheimer’s & Dementia: Translational Research and Clinical Interventions, this study offers new hope to families and patients facing a devastating diagnosis. It shows that, in some cases, what looks like dementia may actually be something much more treatable.
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