Diana’s spinal CSF leak story
Many people with spinal cerebrospinal fluid (CSF) leak find the experience challenging and stressful, even if they are diagnosed and treated promptly. Diana’s case stumped the doctors she saw, and she had to advocate for herself at a time when she could barely understand what was happening. Luckily, her spinal CSF leak was resolved quickly. Here is Diana’s story.
Onset: “I was terrified”
How old were you when your spinal CSF leak symptoms first started, and what was that like?
I was 33. I was golfing on a very hot day. After my third shot into the round, I started get a very bad headache in the center of my forehead. Assuming I was over-heating, I cut the round short and tried to drink some fluids. I went to bed feeling a bit better and didn’t think much of it—until the next day when I got up from bed and five minutes later had to lie down again.
Days went on like this where I could barely stand for longer than a few minutes at a time before I was in unbelievable pain. All the color would drain from me when standing, my vision wouldn’t be clear, it would feel like I was in an airplane, and I was nauseated. I went from being a happy, healthy, active 33-year-old mother of two kids to an invalid in a matter of days. I was terrified.
Did you have any other medical conditions at the time?
No.
What was your most compelling symptom?
Positional head pain.
Finding a diagnosis and treatment
How long did it take to get a correct diagnosis?
I spent more than two weeks advocating for this condition and five long days in the hospital emergency department before I finally was able to find a doctor who believed that I had a spinal CSF leak. I recognize that others suffer with this condition much longer than me, but it was an incredibly hopeless feeling (e.g. the rarity, the misunderstood diagnoses, etc.).
How was your spinal CSF leak treated?
I had an epidural blood patch at the L2-L3 level. Afterwards, I was placed in a Trendelenburg position (lying with my feet elevated above my head) to encourage the flow of the injected blood further up my spine.
Did your spinal CSF leak show up on imaging?
I had a large epidural fluid collection extending from the upper thoracic spine to the sacrum that took more than a year to dissipate after my blood patch. The exact location of the leak was never sought nor found.
Living a spinal CSF leak story
What do you wish doctors knew about spinal CSF leak?
I wish that every doctor had information regarding spontaneous spinal CSF leaks, with all the studies done to date, at their fingertips. It really felt like if I hadn’t researched the topic myself and been able to advocate for myself, I would be still waiting for the problem to fix itself (per the advice of many). I also feel that more money should be raised for studies exploring why blood patches work and how to increase their effectiveness.
What was the most frustrating thing about living with the condition?
Watching life go on without me. To see my kids taken care of by someone else and be unable to even put them to bed at night. Spending long days alone because all others are at work. The hopeless feeling of making endless phone calls, begging doctors, and getting no further. Reading every single piece of literature out there in the hopes that something will provide a piece of hope.
What was the most surprising thing about living with a spinal CSF leak?
The most surprising thing about this experience was that it seemed there was no other path forward for me than to go to the emergency department. Additionally, all the doctors involved in my plan of care disagreed and provided conflicting information.
Looking to the future
What are you hopeful about?
I’m hopeful that my story might be helpful to others. I watched every single story on your website and found comfort in knowing that I wasn’t alone.
What’s your new “normal”?
I have spent more than a year trying not to twist or go into higher elevations. I also cut caffeine out completely. The new normal is a blessing.
Do you have any words of advice for people affected by spinal CSF leak?
Don’t settle. Advocate, advocate, advocate. Find a doctor willing to listen, and advocate for what you know is right for your situation.
What are your plans for the future?
To keep living and loving and experiencing the world.
Further reading:
See our Patient Stories page, where you can watch videos and read narratives of people’s experiences with spinal CSF leak.