A new study from Cedars-Sinai suggests that some people diagnosed with behavioral-variant frontotemporal dementia (bvFTD) might actually have a treatable condition caused by a cerebrospinal fluid (CSF) leak.
Understanding the Condition
Behavioral-variant frontotemporal dementia (bvFTD) is a brain disease that affects behavior and thinking. People with this condition often struggle to control their actions and may find it hard to complete everyday tasks.
However, this new research suggests that some of these cases may not be true dementia, but rather the result of brain sagging caused by a CSF leak.
Cerebrospinal fluid is a clear liquid that surrounds and cushions the brain and spinal cord, helping to protect them from injury. When this fluid leaks into other areas of the body, it can cause the brain to sink downward. This condition, known as brain sagging, can lead to symptoms that look very similar to dementia.
Many Cases Go Undiagnosed
The study found that many people with brain sagging caused by a CSF leak are not diagnosed properly. Because the symptoms can resemble dementia, doctors may not realize that the patient actually has a condition that can be treated.
Researchers suggest that doctors should take a closer look at patients who show specific warning signs. These include:
- Severe headaches that feel better when lying down
- Feeling very sleepy, even after a full night’s sleep
- A past diagnosis of Chiari brain malformation (a condition where the brain tissue extends into the spinal canal)
Finding the Source of the Leak
Even when brain sagging is detected, locating the exact place where the CSF is leaking can be difficult. Normally, doctors use a CT myelogram, a type of scan that uses a special dye to make the leak visible. If the fluid is escaping through a tear or cyst, this method can usually detect it.
However, researchers discovered another way that CSF can leak—through a vein. This type of leak, called a CSF-venous fistula, is harder to see using standard imaging techniques. To find it, doctors need to use a more advanced type of CT scan that tracks the movement of the fluid in real-time.
Life-Changing Results
In the study, researchers used this specialized imaging technique on 21 patients who had both brain sagging and symptoms of bvFTD. They found CSF-venous fistulas in nine of them.
All nine patients had surgery to close the leaks. The results were remarkable—their brain sagging disappeared, and their symptoms completely reversed.
For the remaining 12 patients, the source of the leak could not be found. These patients were treated with other methods aimed at relieving brain sagging, such as receiving extra CSF through an implantable system. However, only three of them saw improvement in their symptoms.
A Second Look Could Lead to Treatment
This study highlights the importance of re-examining patients diagnosed with bvFTD to see if they might have a treatable CSF leak instead. With the right imaging techniques, doctors may be able to identify leaks and provide life-changing treatment to people who might otherwise be told they have an untreatable form of dementia.
The research was conducted by Wouter Schievink and his team and was published in Alzheimer’s & Dementia: Translational Research and Clinical Interventions.
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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