Today is DAY 2 of Spinal CSF Leak Awareness Week.
Our focus for today is: Symptoms of spinal cerbebrospinal fluid (CSF) leak.
We will be covering other aspects of spinal CSF leak throughout the week.
The most common symptom is a positional headache, worse when upright and improved when lying flat.
Why is the headache positional and why is it so disabling?
Normally the fatty brain floats in CSF but when the volume of CSF is reduced, the brain sinks down inside the skull. When upright, the drop in fluid pressure is worsened, but less so while horizontal.
In addition, when horizontal, the rate of fluid leak usually slows down based on simple water pressure dynamics. The brain makes new CSF continuously and while flat, may be able to keep up with a slower leak rate.
Overnight, a patient’s CSF “tank” can fill up slowly such that they feel quite well or normal upon waking. Then when they get up, the leak rate increases and their CSF fluid volume starts to drop. Patients may have minutes or hours upright before the increasing head pain forces them flat again. They will often feel better quickly after getting flat, as a result of having an immediate increase in the fluid pressure in the head, but it may take hours for the fluid level to rise enough to allow the patient to get up again. This can limit how many minutes or hours that a patient can be functional while upright. A “second-half-of-the-day” headache pattern is common and tends not to be recognized as the result of a spinal CSF leak. A patient may look quite well for part of the day, so the severity of symptoms and associated disability is usually underestimated.
The headache is most often located at the back of the head at the base of the skull, but can be frontal, in both temples or all over the head. The severity ranges from mild to severe.
While the hallmark symptom of “upright headache”, or a headache that is worse when upright and improved when lying flat, it should be noted that headache is not universally present nor is it universally positional. It is not unusual for the positional aspect of the headache, when present, to lessen over time, which contributes to difficulties with diagnosis.
See this short video of Dr. Schievink explaining the main symptom of headache.
Other symptoms
In addition to headache, additional symptoms are usually present and vary between individuals.
Common symptoms, other than headache, include neck pain or stiffness, nausea and vomiting, change in hearing (muffled, tinnitus), impaired balance, dizziness, photophobia (sensitivity to light), phonophobia (sensitivity to sound), pain between shoulder blades, changes in cognition (brain fog) and arm pain or numbness.
Less common symptoms include visual changes, facial numbness or pain, changes in taste, fatigue and pain or numbness below the arm level.
Fortunately, serious complications are rare but include quadriplegia (paralysis, weakness), dementia, Parkinsonism, tremor and other movement disorders, stroke, coma and even death.
The National Headache Foundation releases video for Leak Week
Be sure to check out this excellent new video of a patient with spontaneous intracranial hypotension due to a spinal CSF leak being interviewed by Vincent Martin, MD. You may see the video HERE on the website of the National Headache Foundation, where you will find additional resources.
You may wish to visit our information page on Symptoms and download our Symptoms document.
Later this week, we will discuss the diagnosis of spinal CSF leak and why this diagnosis is often missed. The biggest reason, however, is that most doctors are unfamiliar with it. We aim to change that.
Visit our facebook page this evening to see photos of landmarks and buildings shining purple in honor of #leakweek tonight:
Building Owners and Managers Association (BOMA) of Chicago – Chicago, IL
Helmsley Building – New York City, NY
Peace Bridge – Buffalo, NY & Fort Erie, ON
Rundel Memorial Building – Rochester, NY
CN Tower – Toronto, ON
Toronto City Hall – Toronto, ON
3D Toronto sign – Toronto, ON
Skylon Tower – Niagara Falls, ON
Calgary Tower – Calgary, AB
Galleria Trees on Stephen Avenue – Calgary, AB
High Level Bridge – Edmonton, AB
Science World at Telus World of Science – Vancouver, BC
Be sure to save time in your schedule this week for all three of our Expert Q & A sessions LIVE on our facebook page.
