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The world-leading CSF Leak Program at Cedars-Sinai continues to advance the diagnosis and treatment of this often difficult-to-detect disorder.

Cerebrospinal fluid (CSF) leak can be difficult to diagnose and is a widely underrecognized cause of debilitating headache and neurological decline. Cedars-Sinai established the world’s first dedicated CSF leak program in 2000, and the program’s comprehensive, multidisciplinary team continues to break new ground in the field. Its experienced providers offer the most advanced imaging techniques and the complete range of surgical and nonsurgical therapies for all forms of CSF leak, including CSF-venous fistula, a type that was first identified at Cedars-Sinai.

In service of the program’s deep commitment to improving the lives of all CSF leak patients, Cedars-Sinai hosts a biennial symposium to educate clinicians about novel treatments and detection methods. In 2023, Cedars-Sinai gathered 150 leading specialists, patients and advocates to equip them with information about the latest developments in the underdiagnosed, undertreated condition.

Cedars-Sinai has developed novel surgical treatments and pioneered less invasive approaches to treatment as well, such as glue injections and endovascular repairs of CSF leaks. The program also collaborates closely with neurologists who offer innovative medical treatment for superficial siderosis, a long-term consequence of ventral CSF leak.

PATIENT SPOTLIGHT

CSF Leak Repair Resolves Frontotemporal Dementia

In 2016, Russell Secker, an ultramarathon runner who lives in London and North Carolina, began experiencing debilitating headaches and shortness of breath. For three years, his condition remained undiagnosed and his health deteriorated. He developed personality changes, mood disturbances and cognitive decline.

Secker, now 68, is among a segment of cerebrospinal fluid (CSF) leak patients who experience symptoms indistinguishable from behavioral-variant frontotemporal dementia, an incurable disease. Cedars-Sinai’s Wouter Schievink, MD, director of the Cerebrospinal Fluid Leak and Microvascular Neurosurgery Program and professor of Neurosurgery at Cedars-Sinai, intends to develop methods to better identify leaks in this population.

Schievink authored a milestone paper, published in Alzheimer’s & Dementia: Translational Research and Clinical Interventions, showing that patients with dementia caused by CSF leak can be identified with digital subtraction myelography and treated with surgery to resolve all symptoms—even those experienced for decades. The work suggests that physicians treating dementia should more closely examine patients’ MRIs for brain sagging, an indicator of the condition.

In 2019, Secker’s CT scans and X-rays suggested CSF leak, but physicians couldn’t identify its source. Secker’s wife, Claire, contacted Schievink, and in May the couple traveled 5,000 miles to Los Angeles. At Cedars-Sinai, imaging experts used digital subtraction myelography to pinpoint the fistula along Secker’s spine, and Schievink repaired the leak using two titanium clips.

Immediately following surgery, Secker regained mental function, and his symptoms resolved within a week. He underwent repair for a second CSF leak in June 2023, and the Seckers now work to raise funds and awareness for the condition—an essential effort, Schievink said.

“Many patients experience cognitive, behavioral and personality changes so severe that they are arrested or placed in nursing homes,” he said. “There’s no treatment for behavioral-variant frontotemporal dementia with an unknown cause, but patients with cerebrospinal fluid leaks can be cured if we can find the source of the leak.”