Researchers at Cedars-Sinai have made an important discovery that could change the lives of some people diagnosed with a type of dementia called behavioral-variant frontotemporal dementia (bvFTD). This form of dementia is known for affecting behavior, personality, and decision-making.
However, the new study suggests that some people diagnosed with bvFTD might actually have a different, treatable condition: a cerebrospinal fluid (CSF) leak.
Cerebrospinal fluid is a clear liquid that surrounds and protects the brain and spinal cord. It acts like a cushion, helping to prevent injury. But when there is a leak in this fluid, it can cause the brain to sag inside the skull.
This sagging puts pressure on the brain and can lead to symptoms that look just like dementia. People with these leaks can experience memory problems, mood changes, and difficulties in thinking clearly—symptoms that are often mistaken for bvFTD.
One of the reasons these cases are misdiagnosed is that brain sagging from CSF leaks is not always detected in standard medical evaluations. Many doctors are not trained to look for this connection, so patients with brain sagging are sometimes mistakenly diagnosed with irreversible dementia.
The researchers at Cedars-Sinai are now urging doctors to take a closer look at certain warning signs that might indicate a CSF leak instead of bvFTD.
These signs include severe headaches that improve when lying down, feeling excessively sleepy even after getting enough rest, and having been previously diagnosed with conditions like Chiari brain malformations, which are structural defects in the brain and spinal cord. These clues could point to the presence of a CSF leak.
Detecting a CSF leak is not always easy. Traditional imaging methods like a CT myelogram often miss leaks that drain into veins. To solve this problem, the researchers used a special kind of CT scan that follows the movement of a contrast dye through the cerebrospinal fluid.
This technique helped them find leaks, called CSF-venous fistulas, in nine out of 21 patients who had symptoms of brain sagging and were diagnosed with bvFTD.
The results were remarkable. All nine patients with identified CSF-venous fistulas underwent surgery to seal the leaks. After surgery, their brain sagging disappeared, and their dementia-like symptoms were completely reversed.
For these individuals, what seemed like an untreatable form of dementia turned out to be a fixable problem. This discovery gives new hope to people who may have been misdiagnosed with a permanent brain disease.
However, the study also found that not all leaks are easy to find. For the 12 patients in the study whose leaks could not be pinpointed, doctors tried non-targeted treatments to relieve brain sagging. Sadly, only three of these patients showed improvement. This highlights the importance of finding the exact source of the leak for effective treatment.
The Cedars-Sinai study is groundbreaking because it shows that some forms of dementia might actually be caused by a fixable issue. The researchers believe that doctors should take a second look at patients with bvFTD who have certain symptoms. Advanced imaging techniques could help identify leaks that standard tests miss, allowing for targeted treatment that could reverse symptoms.
These findings, published in Alzheimer’s & Dementia: Translational Research and Clinical Interventions, could change the way some types of dementia are diagnosed and treated. For patients and families dealing with the devastating effects of bvFTD, this discovery is a ray of hope. It suggests that for some, recovery is possible with the right diagnosis and treatment.
The study urges doctors to think outside the box when diagnosing dementia-like symptoms, especially when headaches or unusual sleepiness are also present. With better imaging and awareness, more people might be able to avoid a misdiagnosis of dementia and receive life-changing treatment instead.
If you care about dementia, please read studies about Vitamin B9 deficiency linked to higher dementia risk, and flavonoid-rich foods could help prevent dementia.
For more information about brain health, please see recent studies that cranberries could help boost memory, and how alcohol, coffee and tea intake influence cognitive decline.
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