Anna’s spinal CSF leak story

Spinal cerebrospinal fluid (CSF) leak is often confused with other diagnoses. Like so many patients, Anna was told her symptoms were due to sinus infection or migraine. Here is her story.

 

A gradual beginning

How old were you when your spinal CSF leak symptoms first started, and what was that like?

I was 30 years old when I noticed I was starting to have pain when coughing, or doing yoga. Soon I couldn’t stand upright without a gradual, debilitating headache, but I tried to ignore it. Then my symptoms began to get worse. I noticed every time I coughed, I would get a horrible pain in the front and back of my head. I practice jiu jitsu, and every time I would spar with a partner my symptoms got worse. I would have to stop and hold my head, waiting for the pain to go away. My vision would go black and I couldn’t think.

 

What was your most compelling symptom?

Extreme pain in the front and back of my head when standing, complete relief when laying down.

 

Did you have any other medical conditions at the time?

No. 

 

Finding a diagnosis and treatment

How long did it take to get a correct diagnosis?

It took 3-4 months to get a correct diagnosis. I initially thought I had a sinus infection. I saw an ENT but was then referred to a neurologist. The neurologist treated me for migraine. The migraine medication did not work, and it was clear something else was happening. I had to take time off work, stop all physical activity, and lay down most hours of the day. I spent almost 4 months with debilitating symptoms, seeing doctor after doctor. 

 

Did your spinal CSF leak show up on imaging?

My leak did not show up on an MRI of my brain, but it did finally show up on the MRI of my spine.

 

How was your spinal CSF leak treated?

My symptoms were so severe, yet they would disappear if I was laying down. Due to this positional nature of my symptoms, my neurologist suggested an epidural blood patch. After the blood patch I felt 100% better—for about 5 days. After that, the leak symptoms came back, though not as strong. I then had an MRI of my spine, which revealed the exact location of the leak. I wanted to cry with relief. I received a second blood patch at the leak location and have been in the clear ever since!

 

Living a spinal CSF leak story

What do you wish doctors knew about spinal CSF leak?

My ENT said she didn’t think I had a CSF leak because I didn’t have fluid running from my nose. [N.B.: Fluid from the nose is typically seen in the case of cranial CSF leaks, not spinal CSF leaks.] I wish doctors knew about the variety of ways a spinal CSF leak can present, even with negative imaging/testing.

 

What was the most frustrating thing about living with the condition?

Putting my whole life on hold; the at times excruciating pain; feeling confused and not knowing what was happening; going to the ER only to be treated for migraine; being bounced from specialist to specialist.

 

What was the most surprising thing about living with a spinal CSF leak?

I am stronger than I ever knew. I learned to lean on my support system, my friends, family, and to believe I would make it through no matter what.

 

What helped you cope?

My friends and family. They took care of me, picked up the phone when I needed help, drove me to doctors appointments, and held my head when I was in pain.

 

Looking to the future

What are you hopeful about?

I feel hopeful about my ability to adapt and be resilient.

 

What’s your new “normal”?

I am now back at jiu jitsu, back at work (I teach preschool), and enjoying time with friends without worrying, being in pain, and needing to lay down! I now feel hypervigilant about any sensation I feel in my head, and I often wonder, is this a normal headache from a long day of teaching, or is this my spinal CSF leak returning? Most of the time I am just so grateful I have my life back!

 

Do you have any words of advice for people affected by spinal CSF leak?

Even though we didn’t ask or want this experience, it has shown me that we are stronger than we ever knew. Lean on your friends and family, ask for help, talk about how you are feeling. Keep advocating for yourself to your doctors. What you are experiencing is a debilitating condition and you deserve relief.

 

What are your plans for the future?

I plan on practicing more jiu jitsu, spending time with friends, and living pain free!!

 

Further info:

Visit our Patient Stories page, where you can watch videos and read narratives of people’s experiences with spinal CSF leak.