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Slide 1: What is cerebrospinal fluid?

The central nervous system includes the brain and spinal cord, which act as the body's control center.

These structures are surrounded by cerebrospinal fluid (CSF), which cushions and protects the brain and spinal cord from injury.

[diagram of the central nervous system with brain, ventricles, cerebrospinal fluid and spinal cord labeled]

Slide 2: What are CSF leaks?

A CSF leak happens when CSF leaks out through a tear in the dura, the outer lining that surrounds the brain and spinal cord.

There are two main types of CSF leaks:

Spinal CSF leaks

Occur anywhere along the spine

Cranial CSF leaks

Occur in the skull

CSF leaks may happen after medical procedures, injury, or without an identifiable cause.

Slide 3: CSF leaks in EDS

The Ehlers-Danlos syndromes affect connective tissue, which provides structure and support throughout the body.

In some people, this can make the dura more fragile and more prone to CSF leaks.

Chiari malformation type I may also occur in people with hypermobile EDS and may be associated with CSF leaks in some cases.

[diagram of Chiari malformation type I]

Slide 4: Symptoms of cranial CSF leaks

Cranial CSF leak symptoms may include:

Clear, watery drainage from one side of the nose or ear

A salty or metallic taste in the mouth

Loss of sense of smell

Changes in hearing

Changes in behavior or ability to think clearly

[image of a head in profile with red dots on nose, mouth, ear, and brain]

Slide 5: Symptoms of spinal CSF leaks

The most common symptom of a spinal CSF leak is an orthostatic headache.

Orthostatic headaches are headaches that worsen when standing or sitting up and improve when lying down. They typically affect the back of the head and may also be triggered or worsened by coughing or straining.

Other symptoms of spinal CSF leaks may include:

Neck or shoulder pain

Changes in hearing

Dizziness, nausea, or vomiting

Changes in vision

Sensitivity to light or sound

Changes in behavior or ability to think clearly

Slide 6: Intracranial hypotension

CSF leaks can lead to low pressure inside the skull, known as intracranial hypotension.

This change in pressure is one of the reasons people experience orthostatic headaches and other symptoms.

[image of brain with a deflated shape labeled: Cerebrospinal fluid

Low pressure can cause the brain to sag]

[image of deflated balloon labeled: Deflated Balloon

Lost 'cushion' due to CSF leak]

Slide 7: Diagnosing a CSF leak

Healthcare professionals may use a range of tests to help diagnose a CSF leak, depending on the symptoms and suspected location.

These tests may include:

Beta-2-transferrin testing of fluid leaking from the ear or nose

Spinal tap, also known as lumbar puncture

Computed tomographic (CT) myelography

Intrathecal fluorescein

Magnetic resonance imaging (MRI)

In some cases, additional imaging techniques may be used to find the source of the leak.

Slide 8: Managing a CSF leak

Management depends on the type and location of the leak, as well as the underlying cause.

Conservative approaches may include bed rest, increased fluid intake, and caffeine, which may help relieve symptoms in some cases.

If these approaches are not effective, other options may be considered, such as:

Epidural blood patch

Fibrin sealant

No matter how injured. If a parent doesn't deem it necessary to see a doctor, it doesn't happen. Teachers can suggest a doctor visit, but unless it's a very acute injury (and even then), it's ultimately up to the parents.

You can be 13. Twisted, maybe broken ankle. You teacher lets you sit out in PE. She's concerned, and tells you to rest when you go home, and see a doctor. You get home, ur parents fill a bath and add some Epsom salts, and then laugh at you for using it moms old colorguard stick as a cane. Take some ibuprofen they say. It's just a little sprain, ur a kid.

You go to school the next day, go to ur office assistant time. Office calls ur mom to come get you, because you're clearly in too much pain for school. Your mom laughs when she gets you, says you just were so determined not to miss school. Scolds you for making the office ladies worry.

You never see a doctor for the injury.

Your parents come into the exam room at every visit. This does not stop with age, except for gynecologist. But your parents are on the medical release forms. They fill them out for you, with you. You do not get to take them off.

You never get to tell s doctor about the ankle. Even though it never quote healed right, and it hurts every day.

Then your 18. In college. Still on your parents insurance, and have no car. The on campus clinic only does std testing. You fall down some stairs. Same injury. You call your parents, crying from the pain. You are using a mop as a cane. They console you and say to have a bath, take some meds, and let them know how it feels in a few days. You end up borrowing your roommates rolling chair to get around for the weekend.

By Monday, you can walk again. You walk miles to class every day. You ask to see a doctor, but your parents won't drive the hour to come take you, and you don't have the insurance card. You are still at their mercy for medical care. The ankle tries to heal again. This time worse than before. The tendons click with every step.

Now you're in your twenties. Finally have your own healthcare. You see a doctor. You get to mention the ankle! They say it's been too long to really even know what was damaged. That you have arthritis now. It healed wrong but it can no longer be fixed.

Do I miss some foods I can't eat anymore without getting sick? Sure, but that's not what really bothers me. What bothers me is being excluded from a huge portion of human social life of which food is a crucial component. What bothers me is the stress and social stigma of trying to figure out what I can safely eat. What bothers me is the amount of extra work and cost that is required of me to identify, obtain, and prepare safe foods. What bothers me is people treating my needs like a nuisance, as though I chose to be like this - as though their brief inconvenience to check an ingredients list is unreasonable, when I deal with this every day of my life forever.

I don't miss the food that much. I miss not having to worry about what I eat. I miss freedom. I miss when trying new foods and new restaurants was fun instead of a minefield. I miss not having to plan my entire life around the need for safe foods.

So from then on whenever one of us called something problematic, he would make us talk it out until we could name the “bad” thing we were hinting at. In this particular class, 7/10 it was some type of oppression, and the remainder was like, “I’m uncomfortable because this is very new/confusing/pushing boundaries that made me feel safe.”

Once we stopped calling things “problematic” and stopping at that, class got way more interesting and... we all had to say, like, “that’s racist” or “that’s misogynistic” or “ew capitalism gross” out loud, which a lot of us had never done in a classroom before. Or we had to be like, “Uhhh... I’m not sure what’s so bad?” and confront our own beliefs and that was maybe even more useful.

SURE, I CAN LEGALLY MARRY MY WIFE RIGHT NOW, BUT IN DOING SO BOTH OF US WILL HAVE OUR DISABILITY BENEFITS CUT AND WE WILL THEN BE STRUGGLING FINANCIALLY.

THAT IS MARRIAGE INEQUALITY

WE, AS DISABLED PEOPLE, ARE PREVENTED FROM BEING MARRIED OR WE WILL BE FUCKED FINANCIALLY

I WANT TO MARRY MY WIFE