CSF Leak Patient Won't Wait for a Cure to Be Happy Cedars-Sinai Skip to content Close Select your preferred language English عربى 简体中文 繁體中文 فارسي עִברִית 日本語 한국어 Русский Español Tagalog Menu Close Call 1-800-CEDARS-1 toggle search form Close Share Email Print CS-Blog Cedars-Sinai Blog CSF Leak Patient Brianna Won' t Wait for a Cure to Be Happy Nov 18, 2018 Katie Rosenblum Share Tweet Post Brianna Cardenas recovering after a blood patch procedure to treat a CSF leak. For more than 3 years, Brianna Cardenas felt a mysterious pain in her head and neck. The La Verne resident's condition got so bad that she couldn't stand without severe pain and dizziness. She was having trouble breathing and she was forgetting or slurring her words. Doctors at her local hospital couldn't figure out what was wrong. "I am living a more mindful and purposeful life in spite of this condition. There are a lot of people who suffer with this on and off their whole lives, and I want them to know that they can still have a life even if they aren't cured." "I was having terrible symptoms. My heart was beating so fast and my body was shaking," she remembers. "They drug screened me at my local ER before they did anything else because they didn't believe me and they couldn't find an organic cause." Making matters harder was her pre-existing condition—hypermobile Ehler's Danlos syndrome (hEDS), a connective tissue disorder that causes her to have loose joints and chronic joint pain. Read: Brain Tumor Patient Rachel Brandt Tackles the NYC Marathon Brianna saw 15 specialists and none could find the source of her pain. When her condition further deteriorated and she couldn't remember her best friend's name, Brianna decided it was time to go to the emergency room at Cedars-Sinai. She quickly felt at ease with her decision. "They knew right away what hEDS was. This was the first place I've ever been where they knew exactly what is was," Brianna says. Once she got to Cedars-Sinai, doctors began looking for the cause of her symptoms. After meeting with Dr. Wouter Schievink, director of the CSF Leak program, Brianna had a myelogram, a type of X-ray that looks at the spaces between the bones in the spinal column. The test revealed Brianna was experiencing a cerebrospinal fluid (CSF) leak, a loss of the fluid that protects and cushions the spine and brain, caused by a small tear the membranes that contain the fluid. The leak had also developed veins, known as a CSF-venous fistula, making her situation that much more unusual. Read: Stroke Patient Kate Briscoe Is Beating the Odds A week after she arrived at the hospital, Brianna had her first epidural blood patch, a procedure that involves injecting the patient's own blood into the spinal canal. This results in a blood clot that "patches" the hole where the leak is occurring. "The first patch completely cured my pain," says Brianna. "Unfortunately, it only worked for a couple of weeks, but we knew we were on the right track." Brianna has since undergone 7 blood patches—each providing only temporary relief—but she's not giving up hope that her CSF leak can be cured. Soon, she will undergo another procedure she hopes will offer a more long-term solution. The fibrin glue patch procedure is another type of patching that involves injecting a fibrin glue in the specific location of Brianna's leak. "I don't know if this will ever be 100% over, but I don't want to wait for a cure to be happy," says Brianna. "I am living a more mindful and purposeful life in spite of this condition. There are a lot of people who suffer with this on and off their whole lives, and I want them to know that they can still have a life even if they aren't cured." Read: An Uncommon Cold: Runny Nose and Headaches Signaled Rare Disease Tags Neurology Brain CSF Leak Patient Stories Neurosurgery Share Tweet Post Popular Categories Health + Wellness Science + Innovation Community Blog & Magazines catalyst Blog & Magazines Home CS-Blog Blog CS Magazine Cedars-Sinai Magazine discoveries magazine Discoveries Magazine Embracing our Community Embracing Our Community Blog & Magazines catalyst Blog & Magazines Home CS-Blog Blog Embracing our Community Embracing Our Community CS Magazine Cedars-Sinai Magazine discoveries magazine Discoveries Magazine Popular Topics In Our Community Faces of Cedars-Sinai Patient Stories Los Angeles Behind the Scenes Make an Appointment Find a Doctor Schedule a Callback Call us 24 hours a day 1-800-CEDARS-1 Support Cedars-Sinai Make a Gift Volunteer Share Email Print Please ensure Javascript is enabled for purposes of website accessibility