Nick Stevens (he/they) shared their decade-long search for proper diagnosis and treatment for spinal CSF leak at the inaugural Bridging the Gap conference on November 11, 2023.
Nick’s story is, overall, one of remarkable resilience as they battled through years of uncertainty and pain to finally find answers.
A Fateful Accident
Nick’s story began at age 11, when a horseback riding accident resulted in the onset of spinal CSF leak symptoms and a diagnosis of post-concussion syndrome. This plunged Nick into a world of disconnection and isolation, as Nick’s parents were advised to limit Nick’s upright time to just one hour a day. Nick found solace in the realm of video games, particularly “The Legend of Zelda: Twilight Princess.” This virtual escape provided him with the courage to face his own journey, both in the light and the twilight.
A new complication
As Nick reached adolescence, his chronic spine pain worsened due to scoliosis. The prospect of spinal fusion surgery filled him with fear. Seeking spiritual solace, Nick attended a bible study, but instead of prayers, he received an unconventional “exorcism” from a pastor who believed a demon inhabited Nick’s spine. Confused and questioning himself, Nick carried this burden as he prepared for surgery.
Sent Back to the Twilight
Nick’s surgery took a dramatic turn for the worse when he woke up to intense pain, reminiscent of his previous spinal CSF leak symtpoms. The medical staff’s lack of understanding and empathy compounded his suffering. As they accused him of not trying hard enough to get better, Nick found himself thrust back into the twilight, desperate for answers.
The Road to Diagnosis
It wasn’t until senior year of high school that Nick had the term “CSF leak” applied to his case for the first time. This revelation led to diagnoses of Postural Orthostatic Tachycardia Syndrome (POTS) and Hypermobile Ehlers Danlos Syndrome. Finally, he received a referral to a CSF leak clinic, where hope resurfaced as a blood patch offered potential relief.
A Glimpse of Upright Life
Nick’s first epidural blood patch brought him a brief respite from pain and a taste of what a normal life could be. While subsequent patches didn’t yield the same level of improvement, Nick remained hopeful. Engaging in live-action role play (LARP) was a source of joy and community, reinforcing his determination to escape the twilight. A third blood patch, performed recently, seems to have offered significant relief, and Nick is hopeful that it will continue.
The journey continues
Nick’s journey to a diagnosis, like that of so many others experiencing symptoms of spinal CSF leak, has been characterized by resilience, persistence, and the pursuit of answers in the face of misdiagnosis and setbacks. We thank Nick for sharing their story with us, and for being so vulnerable, honest, and candid about their experience.
Nick Stevens is a 21-year-old person with a CSF Leak. They enjoy things like LARP (Live Action Role Play) and illustration. Nick’s leak has affected them since they were 11 years old, and they are still undergoing treatment. They hope to help other patients and doctors with their story.