John’s spinal CSF leak story

Spinal cerebrospinal fluid (CSF) leak can affect anyone at any age. John was 71 years old when he experienced his first symptoms. Here is his story.

 

A troubling symptom emerges

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

I was 71 years old when I first began to get headaches when driving for extended periods and noticed I was wincing when the car hit a pothole or rough spot in the road. Then, for several months, I pretty much had a continuous headache except when lying down—which I could reliably do for relief. Other symptoms included excruciating headaches (mostly at forehead and behind eyes) when I coughed, sneezed, bent over, turned in bed, moved suddenly, or stood up; and rare but overwhelming headaches that would awaken me in the middle of the night. I had also had ear popping; light and sound sensitivity; blunted cognitive acuity (a “brain fog” that interfered with my daily functioning and required that I would occasionally stop working); a general avoidance of all sorts of exertion (most of which would invariably result in a headache); and intermittent paresthesia (a sensation of prickling, tingling, numbness) on the top of my head.

 

What was your most compelling symptom?

I lived in fear of the pain of coughing or sneezing. When I got COVID and was doing both of those things continuously, I would try to get my hands up in time to very firmly brace my head to slightly minimize the pain. I understood that with a reduced amount of cerebrospinal fluid that normally would form an insulating cushion around my brain, a cough or sneeze could (as a neurologist explained) my brain to “rattle around in the skull.” I couldn’t figure anything out to mitigate the pain.

 

Did you have any other medical conditions at the time?

None. My onset was spontaneous and inexplicable. One neurologist speculated it could have been brought on by a sneeze, which I was doing fiercely in the hay fever season.

 

Finding a diagnosis and treatment

How long did it take to get a correct diagnosis?

Luckily, the diagnosis (spontaneous intracranial hypotension due to a CSF leak) was apparent to doctors from the start. Only one doctor steadfastly refuted this, maintaining that I had “occipital neuralgia.”

 

Did your spinal CSF leak show up on imaging?

Endless conventional imaging showed nothing for a year. In the 13th month, a brain MRI with and without contrast showed pachymeningeal enhancement—often an indicator of a leak. At that point, a leak was differentially diagnosed based on my presenting symptoms, but with no information about leak location. My neurologist referred me to a specialty center. There, using digital subtraction myelography—two consecutive days of real-time imaging under general anesthesia—two substantial and obvious CSF-venous fistulas were located at T10-11 and T11-12.

 

How was your spinal CSF leak treated?

I had platinum aneurysm clips surgically placed on each fistula site. Today, even as my body continues to recover from surgery, I have none of the symptoms detailed above. I am, frankly, amazed to have my life back.

 

Living a spinal CSF leak story

What do you wish doctors knew about spinal CSF leak?

Doctors need to know:

•  What presenting symptoms might look like.
•  What specialized and contemporary diagnostic and treatment options exist in the US.
•  That endless and interminable conventional imaging rarely reveals leaks.
•  That leak patients may experience a sense of helplessness and despair as a result of the pain and seeming futility of non-productive imaging assessments.
•  That the Foundation exists as a resource.
•  That there is a clear and present need for, whether at the pre-service or in-service level, significantly increasing even the barest familiarity for medical professionals of all sorts of CSF leaks and the attendant diagnostic and treatment expertise that is available.
•  That the absence of conventional imaging objective data showing a leak (in the presence of patient reports of classic leak symptoms) should not lead to suggesting patients are somaticizing (converting anxiety into physical symptoms) but instead to steadfast pursuit of the underlying physical problem.

 

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

Virtually nobody in my family, social, or professional sphere had a clue about what I was experiencing. I often felt isolated and alone. I’m also used to being able to successfully have agency or impact in solving issues in my life. I experienced a powerlessness and absence of control unfamiliar to me.

 

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

That it was finally found and fixed. I had not imagined that was possible. I know that there are many people who live with chronically disabling leaks, and I hope and pray that resources become available to help travel this incredibly and unimaginably difficult path.

 

What helped you cope?

Several things. I kept a journal; when the pain was intense, I tried to focus on my breathing; and, during some of my worst nights, I would turn a flashlight on a question I’d written and taped on the wall above my bed:

“Things are as they are right now—painful and frightening—and I don’t want them to be this way. Today, right now in this very moment, where and how can I offer myself even the tiniest bit of ease, mercy, compassion, or kindness within or around this experience—just as it is?”

As I noted in my journal at the time: “What I read on the wall is an invitation. A call for a simple act of self-compassion. Not to turn my life around, not to lessen the pain, not to feel better, not even to change anything. Just to do something with the intention, if only for a millisecond, to bring to this leak-battered body and mind a wisp of respite. A positive expression of self-care. Nothing earth-shattering or world changing, but some fundamentally human gesture.”

 

Looking to the future

What are you hopeful about?

That those suffering chronic leaks find help, peace, and comfort.

 

What’s your new “normal”?

A slow but sure and cautious return to life as I knew it.

 

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

Communicate! Fight against isolation by reaching for family, friends, and professionals and sharing what you are experiencing. Even as no one can know how difficult your life is, everyone has an experience of pain, fear, etc., to relate to. You’ll be surprised at how much people want to help. Let friends and family know that what you are looking for from them is not to be fixed, but simply to be heard. And when friends and family offer ideas about what you “should” do, appreciate the love and caring behind their suggestions, while recognizing that what they are offering may more be about their own experiences and fears than what is in your best interest.

 

What are your plans for the future?

To step as fully into my life as I can

 

Further info:

Listen to John discuss the complexities of living with spinal CSF leak in our podcast series The Territory and the Map.

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