Researchers at Cedars-Sinai have made an important discovery that could help some patients with behavioral-variant frontotemporal dementia (bvFTD) recover from their symptoms.
Behavioral-variant frontotemporal dementia is a serious condition where people lose control of their behavior and struggle to carry out everyday activities.
Many people diagnosed with bvFTD are told there is no cure, but this new research suggests that for some, the problem may actually stem from a treatable condition: a cerebrospinal fluid (CSF) leak.
CSF is a clear fluid that surrounds the brain and spinal cord, acting as a cushion to protect these vital organs. When this fluid leaks into the body, the brain can begin to “sag” inside the skull, leading to symptoms that look a lot like dementia.
These symptoms might include personality changes, memory issues, or trouble with basic tasks. Unfortunately, many cases of brain sagging due to CSF leaks go unnoticed and are misdiagnosed as dementia or other irreversible conditions.
The researchers found certain clues that can help doctors identify which patients might have this kind of leak.
For instance, patients often report severe headaches that feel better when they lie down, excessive sleepiness despite getting enough rest at night, and may have been previously diagnosed with a condition called Chiari malformation, where the brain tissue extends into the spinal canal.
By asking patients about these symptoms, doctors could catch cases of CSF leaks that might otherwise be missed.
However, finding the exact spot of a CSF leak isn’t always easy. Typically, leaks happen when there is a tear or cyst in the membrane surrounding the brain and spinal cord.
In such cases, a standard CT myelogram scan, which uses a dye to make the fluid more visible, can help locate the tear. But some leaks occur in a more hidden way. For example, CSF can leak directly into a vein, making it almost invisible on standard scans.
To solve this problem, the Cedars-Sinai team used a specialized CT scan technique where they could track the contrast dye as it moved through the spinal fluid.
In a study with 21 patients who had brain sagging and symptoms resembling bvFTD, they found this advanced imaging method made a big difference. Nine of the patients had what’s called a “CSF-venous fistula,” a type of leak into a vein.
Once these fistulas were detected, the patients were able to have surgery to close the leaks. Remarkably, after the procedure, all nine patients experienced a complete reversal of their symptoms—their brain sagging disappeared, and so did the dementia-like signs.
For the remaining 12 patients in the study, where leaks couldn’t be located, doctors tried other treatments that could relieve brain sagging, like using implantable devices to deliver extra CSF.
However, only three of these patients experienced noticeable improvements, showing how crucial it is to find the exact source of the leak for effective treatment.
This research suggests that some people diagnosed with bvFTD may actually have a condition that can be treated if properly identified.
It encourages doctors to look closely for signs of a CSF leak in patients with unusual symptoms and to use the more specialized imaging technique when necessary.
By identifying treatable CSF leaks, doctors might be able to offer a path to recovery for people who would otherwise face a challenging and uncertain future.
The study, led by Dr. Wouter Schievink, was published in Alzheimer’s & Dementia: Translational Research and Clinical Interventions and represents a hopeful advance for those with dementia-like symptoms caused by CSF leaks.
If you care about dementia, please read studies about Vitamin E may help prevent Parkinson’s disease and findings of High-fiber diet may help lower the dementia risk.
For more information about brain health, please see recent studies about antioxidants that could help reduce dementia risk, and Coconut oil could help improve cognitive function in Alzheimer’s.
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