My Journey to Being Diagnosed With a Spinal CSF Leak

I have just received an epidural blood patch (EBP) to treat a spinal cerebrospinal fluid (CSF) leak. For those who do not know the term “EBP,” it is a process whereby an anesthesiologist inserts a needle into your back, much like an epidural during childbirth, and takes blood from your hand and inserts it into the sac-like space that surrounds your spinal column. Let me tell you… I had tears of joy once I was done because it had been a long journey for me to get there — and for many the journey is much, much longer.

It all started on March 19, 2016 when I woke up in the middle of the night completely soaked in sweat and I had to get up to wipe myself down and change my clothes. Shortly after waking up, I noticed I had a terrible headache. It was like nothing I had ever felt before. I attributed it to being a 50-year-old woman and willed myself back to sleep.

Over the course of the next day, I remember thinking, “Wow… this one is really a doozie!” You see, I have had headaches, and quite frankly, I had been getting them more and more frequently, but since I was in my 30s, my remedy for a headache is to drink a lot of water, exercise, practice yoga, and meditation if things get really bad.

This headache was different though.

The pain felt like a terrible pressure around my eyes (like goggles) with a horrible squeezing feeling at my ears and going around the top of my head, and a huge wedge of pain at the very base of my head. I had pressure pain at my sinuses and could not comfortably wear my glasses. Sounds were startling me and I could not keep my balance when doing my yoga poses (despite having never had balance problems at all).

The next 10 days I went to work all the time with this terrible headache. It got worse at the end of the day to the point where I could barely stand to be around my little charges (I teach kindergarten). This was so unlike me, and I was noticing other disturbing symptoms: memory loss, unable to retrieve words, and a feeling that my head was being pulled backwards as though I had been sitting at the computer too long despite not having done so, and a watery liquid would come out of my nose whenever I moved from lying to sitting, or when I bent forward… which is always when you work with 4-year-olds!

Over the next few weeks I had doctor visits, an ER visit where they did a CT scan and gave me meds, but we came up with migraines despite being told I did not
fit the typical migraine. I was given and IV, some meds that helped with the pain and half a day later, my headache was back.

Another few days went by and I ended up in the ER again, in a larger city and I went down much the same path, again, diagnosed with migraine despite being told I did not fit the criteria. They said, “We’ll call it an atypical migraine.” I was scheduled for an MRI the following week, which gleaned nothing.

Two months into this headache, I could not be outside or look at a screen for longer than 10 minutes. I could not have any sound in the house. I’d lie in bed in the pitch black with ice packs strapped to my head and pillows over me with block-out headphones on. I spent the first five hours every day running back and forth to the bathroom as I had severe emesis and nausea. I was losing weight fast. I was desperate.

I had mentioned to a family member that I had noticed after I would lie down for about 30 minutes or so, I would always feel a bit better. In the mornings, I would wake up with a very mild headache, but as soon as I sat up, my headache was back to its usual status. She asked if I had ever heard of a spontaneous CSF leak and to look it up and ask my doctor about it. I did look up the symptoms, my husband did a little more digging, and I called both my GP and the neurologist. I knew in my heart of hearts that this was my issue. I had never heard of this illness and yet both ER visits I had described to a T, the exact symptoms… that was not a coincidence.

I returned to the neurologist, and she did not believe me. She took notes once again, and named other headache possibilities. “Have you heard of cluster headaches? Perhaps we are looking at chronic headache?” She refuted my actual symptoms and told me it was not possible for me to have a CSF leak because I would be on death’s door and I would have meningitis. She did agree to do an MRI with contrast which I had the next week. This led me back to my GP a few weeks later.

This doctor, thank goodness, was utterly convinced we needed to look at CSF leaks as an option and she was unrelenting. She called the hospital back and asked for a CT myelogram. By a stroke of undeniable luck, she talked to a different neurologist (a headache specialist) who heard enough to believe we might be talking about a CSF leak too.

It still took six weeks to get in to see the new neurologist, but we got on a plan regardless. Unfortunately, with my lack of understanding of the illness and the neurologist’s lack of experience as to the condition and the best course of action, he and the neuro-radiologist ordered a complicated test. I was to simultaneously have, upon a lumbar puncture, a CT myelogram of my brain, and MR myelogram of my brain, and a radio-nuclear cisternogram. It was a terrible day for me as I had a
reaction and nobody knew what it was. I had extreme nausea and dizziness and felt faint most of the day, only to throw up in one of the huge imaging machines, and the technician had to halt the test before it was complete. I had to spend the night in the ER as the doctor was worried about my adverse reaction. It was a long night. We did gather some good information though. My opening pressure was 10 (just on the cusp of being low), and sometime during the night my headache was completely gone…vanished for 24 hours.

Again… the imaging revealed nothing.

Just prior to this test I had become friends with another person with a CSF leak through a social media site, and together we pieced together a different plan.  I got into contact with some experts in the field in the United States and asked them to speak to my doctor to lead the investigation in a more efficient manner. My doctor decided to
do a CT myelogram of my entire brain and spine.

I was now nine months into a debilitating headache. Thankfully things had subsided enough that I was not sick every day anymore, although I did vomit regularly a few times a week. I also had periods of two- to three-week stints where I could do nothing but wrap my head in ice and lie in bed crying.

In December, just before Christmas, I was scheduled to have a CT myelogram brain and spine, which involved another lumbar puncture. I had the lumbar puncture with an opening pressure of 4 (which can be a positive sign of a CSF leak) and found out the radio-neurologist ordered an MR myelogram instead and was not doing the CT myelogram. I was upset and frustrated. But I realized as the process was going on that regardless of how frustrating it was, I was going to get another piece to the puzzle. I was disappointed and found out later that again, there was no visible imaging of a CSF leak.

My headache went away four hours after the procedure — for 30 hours this time — and that was a persuasive piece of evidence that there was a leak. Twice now I’d had a lumbar puncture and twice the headache was relieved when something was injected into my spine. I saw my neurologist two days later, and we devised a new plan. We were just going to go ahead with a blood patch.

Scheduled for January, I arrived at the hospital, and no one knew why I was there. I was told, “Actually we have no idea why you are here today.” They said they thought my neurologist was planning on doing the blood patch himself. I have to admit, I was upset. The next day I called the neurologist and expressed my disbelief and asked to be sent to a center where they are more familiar with the procedure and protocol for CSF leaks and epidural blood patching.

I report to you today, that I am one week post EBP and so far my headache has been between a 1/10 and a 3/10 for a week. I am having some side effects of the procedure, but they are bearable for now.

My journey has not been the typical one. I emphasize that a lot of time was spent with doctors who didn’t believe me, doctor’s who didn’t know about the condition, and doctors who knew a little but not enough to be effective. My journey is not the longest by a long shot, but it is long considering my GP asked for the exact test on month two and I asked for a blood patch on month four and I only was treated for this illness appropriately in the 12th month of my trek with spinal CSF leak.

It is still too early to tell for sure if I am “patched,” but I am hopeful. I have learned so much along this journey: some bad things, some disappointing things. But I have learned so many wonderful things as well. I am strong. I am brave. I am resilient. I am
resourceful… and you are too!

Editor’s note: This post represents an individual’s experience and should not be taken as medical advice.

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Thinkstock photo by Ingram Publishing