CSF leaks

Could anybody please shed some light on CSF leaks?
How did you find out about them? What were the main and secondary symptoms? If “runny nose”, how much fluid and how often did you have? What was the treatment?

JustBreathe has posted some info in the discussion below:
ES and Csf leak - Welcome / New User Help - Living with Eagle
And Natty04 discussed some symptoms:
Feeling low - Symptoms and Treatments - Living with Eagle
Hopefully others will add their experience!

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Thanks @Jules @JustBreathe @Natty04
What I’m very interested is how much of fluid from the nose is “not much”. Initially I somehow thought that the CSF leak is like a very runny nose akin to flu or cold, when it’s necessary to hold the napkin over your nose for 30-60 mins at a time and it gets totally wet in a few minutes.
But now I understand that it can be as little as a few drops that look like water, and that is the main difference between the CSF and regular mucus - the CSF literally is leaky and thin as water?

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@vdm
It is a bit more complicated than that (should be the standard disclaimer) . You can have a skull base CSF leak and not have CSF rhinorrhea (CSF coming out of your nose), it all depends on where the leak is and how big it is. The fluid from the nose can range from a mild weeping to a full on drip. If you cannot collect enough fluid for the Beta-2 transferrin test some have used a glucose strip (used by those with diabetes to test blood sugar). There is also the Pledget study as mentioned previously in the link @Jules provided above used for a more accurate diagnosis of the location but it is not 100% either.

For example, I have never been able to collect enough fluid for the Beta-2 test and my pledget study was inconclusive but when i had endoscopic surgery they found obvious defects which showed in the sinus specific CT protocol used by my surgeon.

To answer your question directly regarding the consistency of CSF it is very much like water, clear in color and some report a metallic taste if it drains down your throat. Mucus is thicker and can be colored if infected.

Hope this is helpful! Be well

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Thanks a million @JustBreathe
I have metallic (electric - like holding a battery by the tongue) taste in my mouth/throat occasionally, just can’t decide if that is more related to nerve damage or possible csf leak.

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Recently i saw this video more or less accidentally. It is about csf leaks and a special information for POTS patients. Found it quite informative and worth to post here:

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I love this guy’s attitude, a la …It’s justifiable that they didn’t do this test as the paper about it was released only three years afterwards…
Meanwhile here in Canada… Even things that were known 10-20 years ago are still difficult to discuss with docs.

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So glad to have you back @TheDude! Thank you for sharing this link. I am very interested in this topic & will watch it soon. :blush:

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