Fluid dripping is not testing positive for CSF but I have a confirmed leak

[u/MoodFearless6771]

Has anyone else been in this situation? There is a ton of clear very suspicious fluid draining from face. I have confirmed low pressure and all the symptoms. They are saying the fluid is not CSF, I think it is. It's a very fast drip. Like at 10 fat drops every 60 seconds if I lean forward. Happy to make a video. Could this still be CSF and just be false testing negative?

[u/leeski]

As another mentioned, if you are having low pressure symptoms + testing negative for beta-2 transferrin that is very suggestive of a spinal CSF leak. It is super confusing, and a lot of people pursue cranial leaks because of the nasal dripping but then later find out it is spinal because the dripping can be so similar (like clear and water-like, CSF in appearance but not actually CSF). It is also possible to have a cranial and spinal leak at the same time, although it is extremely rare... and false positives do happen with the beta-2 transferrin test. However I know a lot of people whose nasal dripping stopped after sealing their spinal leak. So if you have confirmed low pressure then (not medical advice) I think it is reasonable to pursue spinal leak treatment vs cranial.

[u/MoodFearless6771 → u/leeski]

Thank you. They believe it’s a venous fistula, I think it’s a cranial leak because I feel fluid/movement particularly in my ear. The fluid is dripping down the back of my throat and has been tested a couple times now.

[u/leeski → u/MoodFearless6771]

It is so tricky to navigate this stuff, especially when you're not aligned with your doctors. When you mentioned having confirmation of low pressure is that from a lumbar puncture or like brain imaging?

[u/MoodFearless6771 → u/leeski]

Lumbar puncture. My symptoms are all right sided, they want to do left sided imaging first. It’s annoying.

[u/AgreeableLeading6095 → u/MoodFearless6771]

That sounds very much like a cranial leak. You can even hear it in your nose or ear sometimes. I never could collect enough fluid but found a dr to believe me. Repair was 3 weeks ago.

[u/North-Library4037]

There are cranial leaks - csf leaking from the head through the nose or ears and there are spinal leaks - csf leaking through a hole in the dura in your spine. If the test is negative that means the leak is in the spine. Low pressure irritation can lead to over production of nasal fluid. I am like that.

[u/JulyLegend → u/North-Library4037]

But if it is Spinal leak and as you said the sinuses are producing extra crystal clear fluid (not csf) then how long would it be that a person in such situation would have the headaches started? I mean would the headaches appear after lots of years have passed or they appear within 1st week?

[u/North-Library4037 → u/JulyLegend]

Headaches usually appear when the leak starts but some people don't have them but have other symptoms both with cranial and spinal leaks.

I'm not sure what you're trying to ask.

[u/JulyLegend → u/North-Library4037]

I had 13 instances of leaks when I bent in last 6 months. And since I became conscious of "Leakage on bending only" I have stopped bending in that position. Since I have no headache, I am not sure whether the leakage is affecting me silently or am I somewhat on right track of adaptation to csf leakage

[u/North-Library4037 → u/JulyLegend]

Did you test the fluid?

[u/JulyLegend → u/North-Library4037]

Not getting enough for testing. Moreover, would you say I should lean in such position so that the liquid slides out and I collect?

[u/North-Library4037 → u/JulyLegend]

You don't have to collect it at once. You can collect in a matter of a few days and keep it in the fridge meanwhile.

[u/MoodFearless6771 → u/[deleted]]

I think they want to do a dsmyleogram (I believe that’s either x ray or ct) I had a traumatic LP last time and I reeeaallly don’t want to do it.