Cedars-Sinai Blog
CSF Leak Patient Brianna Won't Wait for a Cure to Be Happy
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.
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.
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."
