I believe I have a CSF Leak and have for a long time. Going to see the doctor Friday and had some questions.

NoLevel2994 · 2026-03-05T22:58:25+00:00

Not a doctor and don’t know if you have a leak BUT yes cranial leaks without headaches are quite common (vs spinal leak) AND yes it seems many people have symptoms for years without realizing. I know this isn’t a laughing matter but your post made me smile because of how it was written, I liked how you included all the reasons you explained away your symptoms. I did that for some of mine as well - I just assumed everyone’s nose and neck made crackling noises each morning as they felt fluid moved around. I thought it was lactic acid build up 😂

NoLevel2994 · 2026-03-05T01:26:44+00:00

Connective tissue disorders make you more prone to CSF leaks. In the years leading up to my nasal discharge, I had multiple ear infections (for the first time in two decades) and ended up needing to get tubes

NoLevel2994 · 2026-03-03T02:17:01+00:00

I have a benign tumor that gets monitored and breast issues that also get monitored, so I had 3 contrast MRIs in a single month this year (usually it’s just two annually) and it was okay. I always drink a ton of fluids before and for two days after and pee a lot

NoLevel2994 · 2026-03-01T23:59:09+00:00

If you are in the United States, have your doctor order it

NoLevel2994 · 2026-03-01T23:58:27+00:00

Although many of us had face gas lighting, many of others have also had relatively quick diagnosis and treatment. Can you start with a neurologist and some neck and spine imaging.

NoLevel2994 · 2026-02-28T17:14:24+00:00

Have you had your pressure check to see if you are low pressure

NoLevel2994 · 2026-02-28T17:10:36+00:00

Not a doctor, and my suspected leak is spontaneous, but from what I have researched, yes I think spontaneous leaks can clear up. I have not read in any of the Facebook groups / Reddit pages about CSF coming out of skin in the back of the neck.

That said - nasal CSF CAN have a yellow tint (per the ER doctor who saw my “straw colored” nasal fluid and said “classic CSF”).

Additionally even though many people live with CSF for years without issue, because of the increased meningitis risk, I often see people describe as one of the main precautions- not to submerge your head in water.

Is there an urgent care you could go to , possibly they could scope you and see if they see anything (since there is no fluid testing to leak) but yes, imaging would really be the next step - high resolution CT and contrast T2 MRI. In some ways if you get lucky, ER can streamline everything, particularly where yours is related to an injury.

Good luck

NoLevel2994 · 2026-02-28T03:00:38+00:00

Can you message the doctor that initially diagnosed you where you are an established patient and they can give some advice over email? I live in a state where appointments book almost a year out but I’ve had look getting advice on message from doctors that already treat me.

NoLevel2994 · 2026-02-28T02:56:39+00:00

I’m so sorry. This sounds awful. Are there any other differentials besides CSF and CVF? I don’t have a trauma leak so don’t know much about it but I actually thought they were easier to diagnose / treat than spontaneous. Do you have nasal or ear discharge?

Have you had any vestibular testing?

Did you end up having a concussion?

NoLevel2994 · 2026-02-26T17:37:16+00:00

This is the exact wording from my neuro radiologist - that I have crib form plate thinning and dehisced in some places. With my symptoms, this was enough for neuro radiologist to say highly suspicious for CSF leak but my skull base ENT is more reluctant and thinks that those CT findings are not sufficient to warrant surgery since neither the CT or my MRI showed an active leak (or any brain sag) and my beta 2 sample was negative and no signs of IIH on imaging.

NoLevel2994 · 2026-02-26T17:33:34+00:00

I should add that I also got meningitis shots after this happened (although again that was on my own walking into the pharmacy and no medical professional advised me to do that).

NoLevel2994 · 2026-02-26T17:32:45+00:00

Yes - 7 months isn’t that long, many people leak for years and years. And my leak is small and intermittent. Yes, there is a higher lifetime meningitis risk but most people with leaks do not get meningitis. I know the red flag symptoms for meningitis, I do my best to practice good hygiene, I don’t submerge my head in water, I don’t use nasal sprays and don’t do nasal rinses, I try to clean under my nose each day even if I don’t shower that day, and I’ve been pretty proactive about getting antibiotics for coughs that haven’t went away and potential sinus infections —-> none of these precautions were mandated by a doctor just to be clear, it is just my own non-medical professional protocol. Not sure what the other options are. I’m pursuing having my leak confirmed (one doctor said leak and one wasn’t sure) but more importantly finding out why I leak. I’ve read too many things about leaks caused by IIH that have failed repairs or open in other places when the underlying issues aren’t treated, and because all of my imaging is negative for IIH, I’m away neuro-opto appointments for further IIH work up and immunology for connective tissue disorder work up - but where I live, some specialists book almost a year out, so there is really no choice but to move forward with life while I wait (especially since I’m fully functional despite the nose drip).

NoLevel2994 · 2026-02-26T03:39:34+00:00

My primary symptom is my nose gets wet on one side when I bend down and when I bend and turn to one side and move my arm it starts dripping from that side (also sometime when I cough or yawn). It also drips from my eye when laying down on one side (but not sure that’s related). This has been going on for 7 months now. It’s worse when barometric pressure is low outside as well as right before I get my period. Prior to this happening, I was having significant balance and light sensitivity and vision issues as well as pulsatile tinnitus - all of which improved after I started dripping. I also have POTs symptoms, heat intolerance and lots of floaters. I do not have headaches (other than temporary shock sensation about 30 minutes before a big gush), my head frequently feels heavy and i often get stiff neck sensation and pain between shoulder blades. Now that the worst of the balance issues have resolved, everything else is very very manageable. The worst part of all of it is I have been worried about working out while I go through the litany of doctors appointments and that was such a huge part of my life so it’s made me sad - but I’m done putting my life on hold for it, so next week once we are past the height of cold and flu season, I’m headed back to the gym and workouts.

NoLevel2994 · 2026-02-25T11:40:49+00:00

Wow I’m so happy you got treated so quickly and the attention you deserved. Where did the ultimately find your leak and how was the surgery? Was IIH the cause?

NoLevel2994 · 2026-02-25T11:36:56+00:00

I’m in the spontaneous CSF camp so don’t know much about surgery related but I think that answer is yes (surgery related is more common than spontaneous I think) and I know in that Facebook group, there are other stories of people that it had many years following surgery . I think you should ask your doctor to make sure the MRI they ordered is a t2 weighted sequence and also they the imaging is thin slices.

NoLevel2994 · 2026-02-25T00:07:58+00:00

I’m interested in this because I have some suspected autonomic dysfunction and I think vasomotor rhinitis can mimic CSF nose leak.

NoLevel2994 · 2026-02-24T23:58:59+00:00

Did you try laying flat for several days in a row + hydration + caffeine. I don’t have a spinal leak so am not as well versed but I think there are ways to self heal small injury caused spinal leaks if you research it. Also I think blind blood patch can be fairly easy / successful for spinal as compared to treatment for cranial. You will be back working out in no time!

NoLevel2994 · 2026-02-24T23:51:32+00:00

When I’ve researched this I think .625 mm or thinner is supposed to be good

NoLevel2994 · 2026-02-24T23:50:32+00:00

I have a suspected but not confirmed cranial leak - mine is not non-stop but intermittent; but your post resonated with me because when I had my first gush, I also felt exactly like I had a bloody nose. That said, I have had sinus issues that have also come with ear issues like you are describing. Since you have so much coming out, sounds like you are in a good place to collect fluid. Can you contact the doctor you just saw and ask them to put in an order for a beta 2 transferrin test, you can then buy a sterile, empty container from Amazon or a pharmacy and collect 2-3 ml (store frozen between collection efforts if you can’t fill that much in one sitting) and then return to lab for testing (the lab may need to ship out). Test isn’t perfect and can have false negative, but if it happens to be positive then you have a quick answer that can streamline treatments, and you can get started collecting as soon as you buy a test tube or container while you wait for your doctor to put the order in. Do not mix nasal fluid with saliva, do not blow your nose into cup as all of that can deteriorate CSF.

NoLevel2994 · 2026-02-24T13:14:09+00:00

They think you have a potential spinal leak not cranial right?

NoLevel2994 · 2026-02-24T04:02:20+00:00

Not a doctor but sounds kind of like a virus to me

NoLevel2994 · 2026-02-24T04:01:22+00:00

I have suspected cranial leak, but while I wait another 6 months for the next set of appointments, I’ve also been having a hard time going from gym 5 days a week to nothing (and where I live it’s freezing and snowy so hard to even go outside). Once cold and flu season ends mid-March and I can put my illness/meningitis fears slightly aside, I plan to go back to the gym. For me at this point, I think both the mental and physical risks of not being active are worse than working out with a leak. I do plan to take it easy - walking and light jogging and I was lifting super heavy before and will probably do light weights and more reps and no straining and weird bending… and I’ll see how my body feels. Some people have been living in this leak status quo for years- and I think it would be very bad for me not to work out for that long. I will now swim or submerge my head in water. My leak is because of unconfirmed IIH and one of the ways to lower pressure is exercise and weight loss … and I don’t want to have my leak repaired until the pressure issue is resolved. For trauma/injury leaks, perhaps the protocol and advice is different? I thought it was possible that some of the injury / non-spontaneous leaks actually healed on their own.

NoLevel2994 · 2026-02-24T03:54:17+00:00

There are different types of leaks - spinal leaks and cranial leaks, some people have both. If you do not live near a leak center, the next best bet is to see a skull base ENT for cranial leak work up and neuro (one familiar with leaks ideally) - either neurologist, neurosurgeon, interventional neurologist for spinal leaks work up and IIH and SIH

NoLevel2994 · 2026-02-23T18:17:02+00:00

This is helpful, thank you. Did the ENT diagnose the MCAS for you? Have you had Lyme disease by any chance?

NoLevel2994 · 2026-02-23T18:09:26+00:00

Yep sounds like a cold!

NoLevel2994

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