Finding Little Moments of Joy While Enduring CSF Leak

December 2016: The holiday season was in full swing. I was busy wrapping gifts for our young girls, baking cookies, doing holiday and year-end activities at work, all the usual things. Fast forward two weeks, to early January 2017; I woke up one day with severe body aches, elevated temperature but not an official fever, and more-than-usual fatigue.

Being a nurse for nearly two decades, I assessed the situation and determined that I was well enough to go to work. No official fever, no cough, no GI symptoms, means I can make it through the day. I survived that 12-hour hospital shift, but barely. By the end, I was in so much pain — every joint and bone ached, especially my back. From the base of my skull to my tailbone felt like someone had shortened my spinal cord and it was being stretched beyond its limit, just to connect one end to another.

The following days were the same. On day four, I woke up, put my feet on the floor to shuffle to the bathroom, and BAM! I was hit with crushing pain in the back of my skull — like someone had taken a baseball bat to the area where your head and neck connect. The pain was unexpected and took my breath away.

I knew I needed to be seen by a medical provider, today. Nurses are often reluctant to go to the doctor, unless severe bleeding or loss of consciousness is involved, so my husband knew this was serious. We got an appointment right away and off we went.

While waiting in the lobby, filling out the usual intake paperwork seemed extra challenging. I was having trouble focusing, reading the questions, and answering the easiest of things — home address, phone number, etc. I chalked it up to distraction from the pain and waited for my name to be called.

The provider assessed me; nothing drastic was noted but I was sent for a CT scan, just to be safe. The results came back normal, so it was assumed I was having a migraine. I was told to go home and rest.

The following days turned into weeks; I continued to see a worsening of my condition. I returned to the doctor multiple times. More imaging, tons of lab work… all normal. Yet I did not feel normal, in any sense of the word. They decided I must have viral meningitis due to the symptoms I was experiencing. As many know, meningitis can involve a lengthy healing process, with the main prescription being rest. So I was to continue resting and things should improve.

However, I continued to have excruciating pain when I transitioned from laying to sitting or standing. My confusion and sense of disorientation and brain fog were overwhelming at times. Nausea was in full force when upright. My heart was racing and pounding out of my chest. I experienced major sensitivity to light and sound. I was now wearing sunglasses inside, with all the blinds pulled, and could no longer stand to watch TV. The noise of the microwave beeping sent me over the edge.

By May 2017, I was staying in my pitch-black bedroom, curled up in bed, in silence. Sometimes sleeping, sometimes just existing for hours on end. I said daily “I love yous” to my family, but that was all the interaction I could handle. My husband was continuing to work full time, coming home to prepare meals, bathe, play with and raise our girls, as I was being held captive in a body that was abandoning me.

I began crawling as my mode of transportation, the limited times I got out of bed, because my head didn’t hurt as much if I didn’t change positions to fully upright. I was eating meals lying flat in bed.

I went through more doctor and specialist visits, more testing — all still normal. Some doctors even refused to treat me, saying it was “all in my head,” or “I don’t know what’s wrong with you, but I can’t help you,” before walking out of the room, leaving me to continue holding this heavy weight of illness and unknown.

Finally taking matters into my own hands, I began to use my nursing knowledge to carefully and wisely search online for patients with similar conditions. I found many things — Lyme disease, meningitis, vertigo, the list goes on. Then I stumbled upon spinal CSF leak. I was most familiar with those affecting women after childbirth when using an epidural. But I last gave birth four years prior, why would this be affecting me now?

More research, an incredible Facebook group, and the Spinal CSF Leak Foundation website helped me to learn that while it is a rare diagnosis, the most common causes of spinal CSF Leak are from surgeries or procedures. It is also possible to get a spontaneous spinal CSF leak.

I found a local doctor who agreed with this diagnosis. We attempted treatment which resolved the issue short term, only to have it return a couple of months later.

More research led me to travel 1,200 miles to be seen by some of the world’s experts in treating this condition. They also helped me uncover that the viral illness producing the body aches, etc. that started this cascade, was likely the trigger of my CSF Leak. While we will never know the specific name of that virus, when know it was powerful and impacted my entire nervous system. Whether the virus, the nearly one year in bed, or likely a combination of the two was to blame; I was also experiencing dysautonomia symptoms. When the body’s autonomic nervous system; responsible for heart rate, breathing, temperature regulation, digestion, etc. is in a state of dysfunction.

I was fortunate to have my spinal CSF leak repaired after multiple attempts and multiple providers, and it has remained sealed since October 2017. An average patient with CSF leak symptoms can wait a year for an accurate diagnosis, so to have mine addressed and resolved before that timeframe was very fortunate!

Today, I continue to recover and heal from my body’s unique history and medical challenges. I am using a unique interdisciplinary team approach to physical therapy, to explore and explain the science of postural adaptations, asymmetrical patterns, neuromuscular applications, and more. It has healed me in ways nothing else has come close to.

Throughout my entire journey, I have focused on finding joy in the small moments, from giggling with my girls while I lay flat in bed, to making it to the front porch to feel the sun on my face, to the moment I was well enough to stand and when I “got” to do the dishes for the first time in over a year — all very intentional moments of joy.

I have just published a book, sharing more of my story, fighting invisible illnesses and how the power of positive thinking along with fierce faith, has gotten me to where I am today. Check it out: “When Grit and Grace Collide: Persevering Through Life’s Challenges with Grit and God’s Grace.”