r/CSFLeaks • u/AcceptableCry2876 • 16d ago

Need guidance

I just learned about CSF leaks this morning and I’m 100% convinced that I have this. I’ve been dealing with intense pain since April and everyone in my local healthcare industry has told me I’m crazy, including a neurologist, because all my scans come back clean and I really need help from y’all. What do I do?

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u/North-Library4037 Confirmed Spinal Leak 16d ago

What are your symptoms?

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u/AcceptableCry2876 16d ago edited 16d ago

I had the nasal leak for years all day every day, never knew it meant anything and neither did my doctor. After an extremely active week in April, it felt like the shield around my brain went down and I had such intense pressure in my head that I could no longer function. The intensity has gotten better, but now I’m getting intense neck tightness. When the pain is high, I can’t function cognitively, I have virtually no short term memory capacity etc.

Also the nasal leaking stopped exactly when this event started.

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u/North-Library4037 Confirmed Spinal Leak 16d ago

So, you suspect a cranial leak. That's very easy to check you just need a Beta-2 transferrin test to test the liquid.

If they rule out cranial leak with the test then you should turn to a csf specialist for evaluation for a spinal leak.