Scientists at Cedars-Sinai have discovered that some patients diagnosed with a serious brain disease called behavioral-variant frontotemporal dementia (bvFTD) may actually have a condition that can be treated. Instead of dementia, these patients may have a cerebrospinal fluid (CSF) leak, which can cause similar symptoms.
bvFTD is a disease that affects the brain, causing people to lose control over their behavior and making it difficult for them to perform daily tasks. It can be devastating for both patients and their families.
However, this new research suggests that some people diagnosed with bvFTD might not have dementia at all. Instead, their symptoms may be caused by a problem with cerebrospinal fluid, which is a clear liquid that surrounds and protects the brain and spinal cord.
When this fluid leaks out of the brain and into the body, the brain can start to sag inside the skull. This brain sagging can lead to dementia-like symptoms, including personality changes, confusion, and difficulty completing everyday activities. The problem is that many patients with CSF leaks go undiagnosed, meaning they do not get the treatment they need.
The researchers suggest that doctors should take a closer look at patients who show signs of bvFTD, especially if they have certain symptoms that may indicate a CSF leak.
Some warning signs include severe headaches that feel better when lying down, extreme sleepiness even after a full night’s rest, or a previous diagnosis of a Chiari brain malformation (a condition where brain tissue extends into the spinal canal).
One challenge in diagnosing CSF leaks is that they can be hard to see on standard medical scans. When a leak happens through a tear or a small cyst in the protective layer around the brain, it can sometimes be spotted using a special type of scan called a CT myelogram. This scan uses a contrast dye to make the fluid visible.
However, the researchers found another type of CSF leak that is even harder to detect. In some cases, the fluid leaks directly into a vein instead of into the surrounding tissue. These leaks do not show up on normal scans, making diagnosis difficult.
To find them, doctors need to use a special type of CT scan that allows them to watch the contrast dye as it moves through the fluid in real time.
In their study, the research team used this advanced imaging technique on 21 patients who had brain sagging and symptoms of bvFTD. They found that nine of these patients had a specific type of CSF leak called a CSF-venous fistula. Each of these nine patients underwent surgery to close the leak, and their brain sagging and dementia-like symptoms completely disappeared.
The remaining 12 patients in the study had no visible leaks, so doctors treated them using other methods, such as implanting devices that provide extra cerebrospinal fluid. Unfortunately, only three of these patients saw improvements in their symptoms.
This study highlights an important discovery: some people who are diagnosed with bvFTD may actually have a treatable condition. If doctors check for signs of a CSF leak and use the right imaging tools, they may be able to correctly identify and treat these patients, potentially reversing their symptoms.
The research, led by Wouter Schievink, was published in Alzheimer’s & Dementia: Translational Research and Clinical Interventions.
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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