NeuroTalk Support Groups - Post CSF leak support/question

Quote:

Originally Posted by wojo (Post 962658)

I'm a 70 year-old female in relatively good health. About 1 1/2 yrs. ago I had ear infections that didn't go away with repeated treatments with antibiotics. The ENT placed a tube in my right ear. After that my right ear leaked large amounts of fluid during the night--so much that it soaked my hair and left huge spots on my pillow. After a few weeks, the ENT sucked fluid from my ear, but did not test it.

The spots on the pillow had what appeared to be a halo around them. After a month of continued leaking (which diminished somewhat over time), the ENT sent me to my neurologist who saw the tell-tale salt-looking granules in my ear. (I have a small 1/2-inch left front lobe meningioma which has been stable for years.) I have stage 3 kidney disease, so he did not want to give me an MRI with dye, so he just ordered a plain MRI which was negative. The drainage diminished over time and after a few months, the ENT removed the tube.
I continued to feel a fullness in my head. I became very sick in Dec. 2013 with acute sinus infection and fluid in my ear. After three rounds of antibiotics and two rounds of steriods, the ENT placed a tube in my right ear around the middle of February and he sucked out some fluid at that time. Immediately my ear started draining onto my pillow each night and appears worse when I have been very active during the day. I went back to the ENT a few days ago and he didn't see any fluid, but it continues to drain at night.

I generally have a bad headache when I sit up each morning. There is very little drainage during the day, but my ear constantly feels wet. Can the doctors (or me) swab the fluid in the morning and test it that way to see if it's CSF? Or what other tests short of having a spinal tap would reveal if I do have a CSF leak? Also, could the doctor have slipped when he placed the first tube and cut the lining holding the CSF? Any help anyone/advice as to my next step would be greatly appreciated. I also have the extreme fatigue, and have begun experiencing blurry vision (had eye test in Nov and all was well), and occasional dizziness when walking. I really need to know what my next step should be.

I'm new to all this but I can tell you that I was leaking CSF from my nose- especially at night or if I leaned forward. I was leaking from one nostril only, for about a week or so before the headache came that sent me to the ER. The leak was fortunate, and I mentioned it to the right doctor who suspected a CSF leak. (I also had meningitis for a second time and without the leak, treatment would have ended there.)

I was able to give two samples- one was sent for extensive testing that showed it to be CSF, the other was sent for a quicker test that was less reliable but measured the glucose level of the fluid, which came back as a perfect match for CSF. I was able to drip enough to quickly fill the bottom of a sample cup each time. I'm not sure if they need a substantial sample or if a swab can do it from the ear, but they did say I gave "plenty."

It was a clear liquid with the look, consistency and taste of tears. I know, gross, but my drip was very fast and uncontrollable.