CSF leak is very quick and easy to diagnose, it just takes getting a sample of the dripping fluid and test it for sugar -- a simple glucose monitor. Please try to have this done ASAP. CSF leak can be very dangerous for infection. Best wishes!!

Quick update:

I visited an ENT over the weekend. He listened to my symptoms and tentatively diagnosed me with a CSF leak. He told me to go to the big university hospital and speak with a neurologist, which I did. I am scheduled tonight to go and have an MRI of my head taken. They did not ask for a sample of my fluid (it is 99% post-nasal anyway, back of throat, so I doubt I could've produced some on demand).

I feel like I am making progress toward understanding what is happening to me. I am a bit worried that because my symptoms are lower today, the scan may miss something. HOWEVER, I want to make sure that:

a. I am getting the correct testing done
b. I am asking the right questions when I speak to a neuro about the scan

Can anyone with some experience chime in? Is an MRI sufficient to show a CSF leak? Even if there is no 'brain sagging'? And what sort of things should I be asking the neuro when we discuss the results?

A CSF leak does not always show up on an MRI. The best test is the beta-2 transferrin, if you can get a fluid sample. Those who have a CSF leak sometimes experience fluid dripping out of their nose when they lean forward, and can obtain a sample this way. The sample is time sensitive, and is only good for about 4 hrs. at room temperature, or 3 days if refrigerated. Other tests may include a CT with contrast dye, or a pledget test. Also, you can try increasing your caffeine intake to see if this temporarily helps to alleviate some of your symptoms. Although caffeine is contraindicated in those with PCS, it is recommended for individuals with a CSF leak as it helps to increase the volume of cerebrospinal fluid.

This is what worries me... I had my MRI taken last night, but I'm afraid they'll gloss it over and say 'nothing to worry about'. I'm not even going to see the same neurologist tomorrow for my results as the one that ordered the scan. The scan was done without an injection and took about 10 minutes total... I'm guessing this isn't anything too powerful, considering its a public Chinese hospital...

My head is officially spinning...

Got my MRI results back - clear! Or so I thought...

I consulted a neurosurgeon with my scan. He said that he saw no abnormalities. He also said that he believes I have a small skull fracture, contributing to CSF leak... huh?!

I asked why it isn't on the MRI, and he said they aren't always visible on them, and that he needs to do further scanning and a lumbar puncture in order to be sure.

I am about to go in tomorrow and get these tests done...

It sounds like you are getting a thorough assessment done. I have some symptoms similar to yours, but have not been evaluated for a CSF leak. After my car accident, my CT showed that there was fluid in the sinus cavity. It was attributed to sinusitis, which I have never had before. I had fluid leaking out of my left nostril. This stopped after a few months, but I still have congested sinuses, and can feel fluid dripping down the back of my throat. I also have issues with my left ear. It feels like there is fluid in the eustachian tube as well, and I have constant pain in that ear. Hope you determine what your problem is, and that you get better soon. Good luck with your tests.

I got my final evaluation. All in all, I saw three separate neurosurgeons (including the head professor at the teaching hospital) who looked at my MRIs. All three had the same conclusion - no leak. I feel both relieved and upset. I'm relieved that I do not have something so debilitating. However, I also feel upset, because now I feel like I am stumbling in the dark, trying to put a name to my symptoms.

I re-visited the ENT today who originally suspected CSF leak to discuss the results. He seems to want to chase the CSF leak diagnosis even though three neuros said no. When I countered that it could be a sinus infection, he said that he saw no signs of inflammation of mucus buildup from the MRIs. I am to return for a sinus CT and possible camera roto-rooter up my nose at the ENT hospital here to see if there's a sinus issue, but I am fearful that will come back clean, and then I will truly have no answers...

Sounds like you have a brain injury. I guess that can cause so many different problems. Healing thoughts to you.

Hi,

I am confused here:

The symptoms subside greatly when lying down or sleeping.

However, does the drainage occur most at this time? or - Is the drainage occurring more during times before then and then subside after you lie down??

I ask because of my next few questions.

Was a Radionuclide Cisternogram done - a mainstay for CSF Leak evaluations.

--What is a Radionuclide Cisternogram ?

Was any CT testing done, with or without contrast? - again more useful for CSF leak evaluations per studies.

I know you are in a foreign land, and won't be back in the U.S. until July - hopefully you will have all films in hand and get follow-up at home for comfirmation when you get home.


Sitting up with symptom increases could reflect the csf leaking increases which slow to stop when reclining, which are reflected by your symptoms subsiding when you lie down.

Best Wishes...........

Quick update... so far I've seen 3 neurosurgeons and 2 ENTs regarding potential CSF leak. They are all in agreement that there is none presently, or if there is one, that it is so small that it shouldn't be causing my ear issues.

I feel as if my 'classic' concussion symptoms are largely subsiding. I can read, concentrate, go outside and places with lots of sensory stimulation, and my headaches are very mild. For this, I am very thankful.

However... my ears remain plugged. It is not a 24/7 thing. They flare up and subside. They can go from 0 to 10 in a few seconds. Popping will open them up, but they close back up. Basically they don't go away until they are ready to. I believe they flare during physical activity, talking, eating, etc the most. I am not a stressed or anxious person usually, so I feel like that isn't a contributing factor.

I plan on visiting a chiro in the near future. I doubt if there are UCC's here in China, but there are well respected general chiros in my city that I can visit.