The leak started with a play kitchen.

I was home alone on December 17, 2020. My husband was out of town visiting his parents with our daughter, Bean. I spent much of the day wrapping Christmas presents for our family, preparing for two Christmases in the time of COVID. All I had left to do was to assemble the play kitchen we got for Bean.

I hauled all the large and moderately heavy pieces upstairs and through a baby gate. I wanted to assemble the kitchen in the bonus room, where it would be hidden until Christmas. After two hours of brute force, improper use of power tools, some socially unacceptable words, and some odd crackling, crunching sensations in the back of my head and neck, the kitchen was assembled well enough to withstand a toddler. Hopefully.

Immediately after I finished the play kitchen, I developed my first migraine in over two years. Cursing my bad luck, I took my migraine medication and went to bed.

Little did I know that that play kitchen was more than just a little bad luck for me.

A Trickle Becomes a Flow

One day four and a half months later, during the first week of May 2021, my head and neck were bothering me. This had been happening for months already, but today it seemed worse than it normally was. As soon as my husband got home from work, I went to lie down in bed. I knew by now that the only thing that helped this pain was to lie down flat on my back. I chalked it up to poor posture while playing with Bean, who was now almost two, on the floor.

Day after day, the pain continued to worsen. I was fine throughout most of the day, but around 4 pm every day, the pain in the back of my head, neck, and shoulders got so intense, I had to spend the rest of the evening in bed. Even then, it took a few hours of lying down for the pain to subside.

A Flow Becomes a Flood

On Saturday, May 22, 2021, it was just about time for Bean to get up from her nap. As my dad went upstairs to get her out of her crib, the pain in the back of my head, neck, and shoulders suddenly became so painful, I was in tears. It was like someone had turned the pain on with a switch. I went to bed immediately and only got up a few times to get Bean ready for bed. Ultimately, I was bedridden the next day as well.

A Spinal CSF Leak? That’s It!

At this point I really wanted to know what the heck was going on. I was only able to sit up for up to 10-15 minutes at a time before the pain became overwhelming; using that time, I quickly researched what this problem could be. I found a few conditions that could be it…but just didn’t seem right.

Finally, I stumbled upon the website for the Spinal CSF Leak Foundation. As I began reading the symptoms of a spinal CSF leak, I gasped. I knew I had found the answer! Every symptom fit, even disease comorbidities.

My symptoms included:

• Headache that is most commonly worse when upright and better when laying flat (orthostatic or postural headache)
• Nausea
• Neck pain or stiffness
• Sensitivity to light (photophobia)
• Sensitivity to sound (phonophobia)
• Pain between shoulder blades
• Pain or numbness in arms

There are also medical conditions that some people with spinal CSF leaks tend to have that I also have, including an intracranial aneurysm and a heritable disorder of connective tissue (such as Ehlers Danlos Syndrome).

What Is a Spinal CSF Leak?

Most commonly know as Spontaneous Intracranial Hypotension (SIH), a spinal CSF leak is a condition caused by a leak of cerebrospinal fluid (CSF) somewhere along the spine. (CSF is the fluid that bathes the brain and spinal cord, essentially making the brain “float” within the skull). The CSF leaks through a tear or hole in the dura mater, which is the tough membrane that covers the brain and spinal cord. This leak causes a loss of CSF volume around the brain and spinal cord. Therefore, the term Spontaneous Intracranial Hypotension is somewhat of a misnomer. While originally thought of as a condition involving low CSF pressure, it has been discovered in recent years that CSF pressure is normal in the majority of patients with this condition. The symptoms actually occur as a result of a loss of CSF volume. Therefore, I will be using the term spinal CSF leak, since it’s technically more accurate.

Off to the Emergency Room

Given these severe headaches in the setting of my medical history, my husband and I decided it would be prudent to go to the emergency room. We needed to rule out any other possible issues, such as a new aneurysm or a recurrence of my brain tumor.

However, my experience in the emergency room was…frustrating, to say the least. The only positive thing that came out of it was that we ruled out another aneurysm with a CT angiogram and I got an MRI of my brain and spine. The MRIs were negative for any signs of a spinal CSF leak. However, I learned through the medical literature that roughly 19% of patients with CSF leaks have negative MRI imaging, so that alone wasn’t enough to rule out a leak, despite several physicians telling me I was crazy. I was referred to the headache clinic for further evaluation.

A Step Forward with Neurology

Two days after my visit to the emergency room, I met with the headache fellow at the headache clinic. She was thorough, validating, and kind. She agreed that a slow leak couldn’t be ruled out at this point. But she first wanted to try bioccipital nerve blocks because she thought I had features of bilateral occipital neuralgia. The blocks, however, ultimately did nothing, so the neurologist referred me to pain management for an epidural blood patch, which is how most spinal CSF leaks are initially treated.

A successful blood patch would be more or less diagnostic of a spinal CSF leak. I could only hope it would work for me.

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