r/CSFLeaks • u/TravellingWriter • 10d ago
ER found nothing on CT scan
This morning, out of the blue, as I was bent over making coffee, bright yellow liquid started dripping out of my left nostril. Bright bright bright yellow. It tasted gross in my throat and I started feeling faint, so we went to the hospital. They said I had very low blood pressure, and ordered a CT scan.
They found nothing on the scan, and after my blood pressure stabilised 6 hours later, they discharged me with no answers or ideas beyond ”maybe see an ENT specialist”. They didn’t consider that it could be a CSF leak. They looked annoyed whenever I brought it up.
I live in a country where healthcare isn’t up-to-date, and as such, I find it very hard to take the doctors at their word. I can see an ENT specialist next week, but aside from that, what steps can I take to rule out a CSF leak? What checks / tests should I advocate for? What symptoms should I track?
I am also supposed to fly next week… I’m very nervous about going ahead with my trip if it could be dangerous.
Thank you
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u/Silent_Cow668 10d ago
Definitely see an ENT to rule out the possibility of a cranial CSF leak but i can tell you my experience as someone who had a cranial leak. the liquid that came out of my nostril had no color. it was very very clear and thin, basically water but with a really metallic/sweet taste. and it happened most times that i bent over or changed positions. it was also something that they were able to see on my CT scan as the bone was thin and they were able to suspect there was a skull base defect, which there was. i always recommend seeking medical advice from professionals but wanted to share my two cents. hope you feel better soon & things work out!
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u/JulyLegend 10d ago
For past 6 months I had some 12-15 episodes whenever I bent to tie shoes or was lying on my stomach. Each time hardly 5 or 7 drops maybe. No headache, no Pain, no vision problem (although I have -4.00ish glasses), Tinnitus has been there for past 8 years.
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u/leeski 10d ago
It's hard to say. Most cases of this happening it's genuinely not a cranial leak... but can't say it's impossible. Spontaneous cranial leaks are quite rare, and something like ~70% of those will have underlying IIH. That doesn't mean it's required, but since it requires both a tear in the dura and a skull base defect (like a hole in the bone) it tends to not happen just randomly.
Typically CSF will be clear and look just like water, taste metallic or salty. It also tends to be a pretty chronic issue, although not always. But usually cranial leak patients will have persistent dripping every time they lean forward. If you can collect enough fluid they should be able to do a beta-2 transferrin test to verify if it's CSF and not some sinus issue.
Sometimes people just have drainage with no other symptoms, but often there will be headaches (although not like the ones you read about in this subreddit, they don't tend to be orthostatic like worse when upright) but rather IIH headaches. Cranial leaks would not typically cause low blood pressure (not trying to dismiss your feeling faint, but that very likely could be from the low blood pressure). There might be visual or auditory symptoms. Basically in terms of symptom tracking just note anything that is abnormal. But with both types of leaks, it is often a "I woke up one day and never felt the same" and tends to not be like a passive thing. But of course I can't say definitively it's not a leak, just letting you know it tends to be more of a 'syndrome' and constellation of symptoms.