Is It More Than Arachnoiditis? Understanding Spinal CSF Leaks

EveBlackburn
Sep 16
3 min read

As members of the Arachnoiditis community, we are all too familiar with debilitating spinal conditions that are often misunderstood or misdiagnosed. Today, we want to shed light on another condition that shares many overlapping symptoms and challenges: Spontaneous Intracranial Hypotension (SIH), caused by a spinal cerebrospinal fluid (CSF) leak. There is little awareness of this condition among the public and even within the medical community, but it's now recognized that SIH is more common than once believed¹. Raising awareness is the first step toward faster diagnosis and better treatment for everyone².

What Is a Spinal CSF Leak?

Cerebrospinal fluid (CSF) is the clear fluid that surrounds, protects, and cushions your brain and spinal cord³. A CSF leak happens when there's a tear or abnormality in the dura, the tough tissue that holds this fluid⁴. When CSF leaks out, the volume of fluid in the skull decreases, causing the brain to sag⁵. This sagging is what leads to the condition's distinct and often severe symptoms⁶.

The Telltale Symptom: A Positional Headache

The single most common symptom of a spinal CSF leak is a

positional or orthostatic headache⁷. This is the key clue for diagnosis⁸.

What it feels like: The headache gets significantly worse when you are upright (sitting or standing) and is partially or completely relieved when you lie down flat⁹.

While this positional headache is the classic sign, other symptoms often accompany it, many of which will sound familiar to our community:

Head pressure or a "grabbing sensation" in the back of the head¹⁰.
Neck pain or stiffness¹¹.
Nausea and vomiting¹².
Extreme fatigue¹³.
Brain fog or feeling "disconnected"¹⁴.
Sensitivity to light (photophobia) and sound (phonophobia)¹⁵.

Why Diagnosis Is So Difficult

Much like Arachnoiditis, getting a diagnosis for a CSF leak can be a long and frustrating journey. Under-diagnosis and misdiagnosis are extremely common¹⁶.

Here are some critical points to remember:

Symptoms are key: A detailed assessment of your symptoms by a specialist is crucial, as imaging can often be misleading¹⁷.
A negative MRI does not rule out a leak: It's possible for spinal CSF leaks to exist without any evidence on imaging¹⁸. About 15-20% of patients with a confirmed leak have normal MRI brain imaging¹⁹.
Lumbar punctures are not helpful: A lumbar puncture is not needed to make a diagnosis, and a normal opening pressure does not exclude a leak²⁰.

Hope and Healing: Treatment Options

The good news is that

spinal CSF leaks are treatable²¹. Once a leak is successfully sealed, the prognosis is often optimistic²².

Conservative Treatment: For minor leaks, bedrest, staying hydrated, and caffeine may be enough to allow the leak to heal on its own²³.
Epidural Blood Patching: If conservative measures fail, an epidural blood patch (using your own blood) or a patch with fibrin glue can be used to seal the tear²⁴.
Surgery: In cases where patching fails and the leak's location is known, surgery may be considered²⁵.

A word of caution: After a successful patch, some patients may experience

Rebound Intracranial Hypertension (RIH), where the CSF pressure swings in the opposite direction and becomes too high²⁶. The main symptom is a headache that gets worse when you lie flat²⁷. If this happens, you should seek medical attention, as medications can help reduce the pressure²⁸.