Patient Stories
In these videos, patient storytellers share their experiences with spinal CSF leak.
Burke’s Story
When Jack showed symptoms of a spinal csf leak at age 14, his parents Burke and Jody had to push hard for him to be taken seriously. Burke shared his story of being a caregiver for a child with a spinal CSF leak. READ MORE HERE.
Jody’s Story
When Jack became ill at age 14, his parents Jody and Burke pushed hard for his symptoms to be taken seriously. Jody shared her story of being a caregiver for a child with a spinal CSF leak. READ MORE HERE.
Jack’s Story
It’s not uncommon for patients to be disbelieved before eventually finding a proper diagnosis and effective treatment for spontaneous intracranial hypotension due to a spinal cerebrospinal fluid (CSF) leak. When Jack became ill at age 14, his parents pushed hard for his symptoms to be taken seriously. Here is Jack’s story. READ MORE HERE.
Amberly’s Story
When Amberly’s daughter Emma became ill, she was surprised by how elusive diagnosis and treatment were. See Amberly’s story of being a caregiver for a child with spinal CSF leak. READ MORE HERE.
Emma’s Story
Emma was an incredibly active child when she started exhibiting symptoms of spinal CSF leak. Now nearly 12 years into her recovery, she shares her experience with us here. READ MORE HERE.
Karri’s Story
When Karri’s daughter Hailey became ill, it started her family on a ten-year search for answers—complicated by Karri’s own alarming cancer diagnosis. Watch Karri’s story of being a caregiver for a child with spinal CSF leak while also navigating her own illness. READ MORE HERE.
Hailey’s Story
It’s not uncommon for patients to suffer delays in finding a proper diagnosis and effective treatment for spontaneous intracranial hypotension due to spinal cerebrospinal fluid (CSF) leak. For Hailey and her family, however, it took ten years. READ MORE HERE.
Kathy’s Story
Unlike most people with spinal CSF leak, Kathy did NOT experience a positional headache. Instead, she had pressure and pain when she coughed. All her imaging was normal, until one test revealed the elusive reason for her symptoms. READ MORE HERE.
Asia’s Story
Asia had to fight to have her pain taken seriously as a Black woman with an invisible illness. But she found a community online that helped connect her with specialists who correctly diagnosed and treated her spinal CSF leak. READ MORE HERE.
Casey’s Story
Casey, a life-long adrenaline enthusiast, runs marathons and races cars for fun. But at 38, he found himself sidelined with terrible head pain. READ MORE HERE.
Alice’s Story
Alice’s headache started after a sinus infection—but wouldn’t end until she had surgery to address the CSF-venous fistula causing her spinal CSF leak symptoms. READ MORE HERE.
Mason’s Story
Unlike most patients, who endure months or even years of misdiagnosis and unnecessary medications and testing, Mason benefitted from the quick-thinking actions of his long-time personal physician. READ MORE HERE.
Berhanu’s Story
Like so many spinal CSF leak patients, Berhanu’s leak affected not just him but his entire family—and when he suffered a grave complication, it turned out their role in his treatment was critical. READ MORE HERE.
Jeff’s Story
Jeff suffered from textbook symptoms of intracranial hypotension with zero results on imaging. But after extensive testing, the reason for his symptoms was finally discovered. READ MORE HERE.
Katie’s Story
Katie’s spontaneous spinal CSF leak seemed to heal on its own but several years later, a minor car accident resulted in a relapse. She needed surgery to get her life back. READ MORE HERE.
Emily’s Story
Emily’s brain MRI led her doctors to think she had a pituitary tumor. Watch her story and READ MORE HERE.
Aiza’s Story
Aiza’s spinal CSF leak was misdiagnosed for five years. You can READ MORE HERE.
Alex’s Story
Watch Alex share his experience with his spinal CSF leak. You can READ MORE HERE.
Patty’s Story
Patty endured misdirected diagnostic testing and treatments initially but eventually found her way to the physicians that could help her. Read more of her story HERE.
Martha’s Story
Martha considers herself fortunate to have received a relatively speedy diagnosis and treatment, but it wasn’t exactly easy. READ MORE.
Rex’s Story
Mandii and her aunt Heidi had to fight to get her dad, Rex, the care he needed to get better. Video produced by Mandii and shared with permission. READ MORE.
Lori’s Story
Lori’s spontaneous spinal CSF leak was related to Ehlers Danlos Syndrome. READ MORE.
Audrey’s Story
Audrey shares her story of her spinal CSF leak from a labor epidural gone wrong. READ MORE.
Dr. Vincent Martin interviews Carol
See Dr. Vincent Martin of the National Headache Foundation (NHF) interview Carol about her spontaneous spinal CSF leak, which causes intracranial hypotension, or low CSF volume in the head. Please visit the NHF website for a wealth of resources. Shared here with permission.
Dr. Carroll interviews Kristen
Positional Orthostatic Tachycardia Syndrome (POTS) is a type of autonomic dysfunction in which patients experience symptoms and signs with upright posture. In this video Kristen and Dr. Ian Carroll discuss her experience of being treated for POTS, then finally being diagnosed and treated for spinal CSF leak. Shared here with permission.