Monica’s spinal CSF leak story
Many people with spinal cerebrospinal fluid (CSF) leak experience delays in diagnosis and treatment. In Monica’s case, she lived with challenging symptoms for nearly 30 years until her spinal CSF leak was finally diagnosed and treated. Here is Monica’s story.
About Monica
Tell us a little about yourself!
My name is Monica, and I am a mother of two.
How old were you when your spinal CSF leak symptoms started?
At the age of five, I had a bike accident. I was riding in my neighborhood, and a boy grabbed my bike by the handlebars. I flew off and hit the road head-first. My older brother rushed me into the house. I had a huge hematoma on my forehead. I went to the ER, but we had no insurance at the time, so not much was done for me other than being given an icepack for my head. After this incident I began to have occasional headaches.
Did you have any other medical conditions at the time?
I had no other known medical conditions when my symptoms started.
What were your symptoms like?
As a child, after my accident, I’d come home from school with what my mother thought were migraines, I’d head straight for the bathroom and throw up. My head would be pounding, and I’d always end up asleep on the bathroom floor. It was the only way the pain would stop, being flat on the cold bathroom floor. My mom would let me stay there because if I moved the pain would come back.
Finding a diagnosis and treatment
How long did it take to get a correct diagnosis?
It wasn’t until I was in my mid 30’s that my medical team started to lean towards my having a CSF issue. By this time I was having “migraines” more frequently and with regular accompanying symptoms. My primary care doctor was concerned about my head pain and advised me to go to the ER with my next migraine and tell them that I need a lumbar puncture. I had no knowledge of lumbar punctures at this time. I didn’t know what I was being tested for or why. Let me tell you, though: this was by far my worst day ever.
The doctor attempted a lumbar puncture multiple times to get a sample of my cerebrospinal fluid. He tried leaning me forward, he laid me in my side, he brought my knees to my chest. But he couldn’t get more than a few drops. He sent the small sample that he did get to the lab, to test for meningitis. (That test proved negative.)
After the lumbar puncture, I walked out of the room with my head spinning. The pain was like a wave crashing into my head…
I stumbled to the bathroom, nauseated and confused, with blurred vision. I began vomiting as cold sweats set in. Somehow, I made it home in a cab.
The next day, I woke up and I knew I had to find answers. What was this fluid that the doctor was testing and why couldn’t he get enough of it? I spoke with my primary care doctor and she explained to me about cerebrospinal fluid. She told me that since the doctor had not been able to find any during my lumbar puncture, they suspected I might have a leak. And that’s what was causing my symptoms.
That’s when my self advocacy journey began.
Did your spinal CSF leak ever show up on imaging?
No, my leak never showed. I did, however, have a Tarlov cyst that was spotted. That might have been the only thing that convinced my doctors to try a blood patch.
How was your spinal CSF leak treated?
My leak was finally fixed when I was 35. It took two blood patches to fix my leak. The first patch I had gave me instant relief, I can remember being on the OR table and not feeling anything. It was the first time ever that I could remember not having any pain in my head. I had always had pain of some sort in my head, for as long as I could remember. I laid there and I cried. It was amazing! Sadly, it was short-lived. But a month later I had a second patch, and I’ve been sealed ever since.
Living a spinal CSF leak story
What do you wish doctors knew about spinal CSF leak?
I wish doctors knew that not all leaks are alike. That not all leaks will show on imaging. That there’s such thing as a slow leak. Most of all, I wish they knew empathy. I was really surprised about how often I was dismissed by doctors. Rather than tell me that they weren’t able to help me, they made it seem as if I was making up my symptoms so they wouldn’t have to take responsibility.
What’s the most frustrating thing about living with the condition?
That nobody can see it. That it’s not well known by the general population, or by your average person. And that you never know exactly when it will end or if it ever will.
What helped you cope?
My family and my dog, first and foremost. But my spinal CSF leak family from social media saved my life in every way possible.
If I needed reassurance, empathy, understanding, or knowledge, they were there. They are still there. I can never repay them, but I will try!
Looking to the future
What are you hopeful about?
I’m hopeful that all of the doctors, clinicians, and supporters we have involved in spinal CSF leak research will keep pushing forward to bring light to this condition so that one day we’ll have a solid solution to diagnose and fix leaks.
What’s your new “normal”?
Oh, wow. Please excuse the tears filling my eyes. I haven’t been asking this question yet! My new “normal”—this is something I have trouble with saying, or I guess admitting. You have to understand, that leak was my whole life. It’s the only state I ever really knew. I didn’t have experience living any other way. I didn’t really live much. So it’s hard to say “normal,” cause I feel like it could slip away the second I take it for granted.
My new normal is unimaginably different from what I ever knew. It’s road trips, it’s marriage, it’s honeymoons, and first flights to Hawaii. It’s a full-time job. It’s concerts and movies, comedy shows and museums. It’s going to a bar or a club, dancing and laughing til I have tears in my eyes. It’s everything I had no idea was possible.
But . . . a little bit of it is guilt. I don’t think that will ever go away. I know that so many people are still suffering the same way I was before, and I wish they could be healed like me. Oh, that part hurts, it really does. This is why we can never give up, on ourselves or on our fight for diagnosis and treatment.
Do you have any words of advice for people affected by spinal CSF leak?
Keep pushing for diagnosis. Be your own best advocate! Learn as much as you can about your condition and about treatments. REACH OUT! If ever things are getting too hard for you, reach out to others. Join a support group of some kind, whether on social media or within your community or a mental health group. Take help when offered.
What are your plans for the future?
My plans are to continue to heal, and to fight to be as healthy as I can be. To continue advocacy work for spinal CSF leaks. And to continue doing things I never got the chance to do because of my leak.
I’m living now. I’m not just alive.
Further reading:
See our Patient Stories page, where you can watch videos and read narratives of people’s experiences with spinal CSF leak.