CSF leak? - how to convince doctors something is amiss

[H.Savoy]

Hi.  I had surgery for a VS Oct.2014. I was in the hospital 3-4 days. Two days after returning home I was convinced I had a CSF leak.  This was later confirmed with my doctor and I was back into surgery 2 days later to have it repaired. (On call doctor at the hospital on a Saturday late night dropped the ball by telling me I could wait till Tues.)  Anyway, tow things.  First, my left eye (affected side) has never seemed right.  It always seems to feel like there's stuffing in the socket with my eye and sometimes the vision seems off.  Was referred to an ophthalmologist who diagnosed dry eye and recommended eye drops 6x/day.  I'm the first to admit that I have a very hard time following these instructions, on the other hand, none of the eye drops say they are recommended for that kind of use.  Second, and now of more importance, is that I feel like the CSF leak is back.  I have a moist squishy sound in my left ear if I press on it (and MRI show fluid in the mastoid cavity) and sometimes on release of the pressure it feels like there's drainage down the back of my throat.  On occasion I also feel a drip develop in my left nostril.  Frequent salty sweet taste on left side of mouth too.  This is behaving different than the first leak. (First leak - if I yawned, I would need to swallow immediately as if would feel like I had just taken a drink of water upon closing my mouth from the yawn. And the leak was more pronounced from my nose when leaning forward.)  My head also feels "full" frequently, like an overfilled balloon.  I am trying to track when this feeling is worse, but I'm not having any luck correlating it with anything.  Neither my Neurosurgeon, or ENT believe there is anything amiss - MRI looks fine, and even if there is fluid there's no where for it to go.  (the fix for the leak was to essentially drill out all the ear parts and pack my skull with wax)  I am trying to gather some fluid for testing & physical proof, but it's coming so slowly I'm having a hard time.  Does anyone have any thoughts or suggestions?  I am especially worried that if fluid is getting out, others can get in....and since we've been to the Atlantic, and the pools I'm a bit concerned.  Thanks!

[Crazycat]

Savoy,

  Sounds to me like you may have needed a shunt installed. I had one put in one month before surgery. My tumor was the size of a golf ball and had blocked a ventricle or something causing pressure from backup of CSF. I went in the hospital for about two weeks before the main event surgery a month later. The night of the shunt surgery I remember getting very sick with projectile vomiting. They immediately gave me a CAT scan and found that the shunt had somehow become dislodged. The next morning I was rushed back into surgery to have it done over again. It's worked fine ever since. In fact, my equilibrium was noticeably improved after the shunt surgery and before the tumor resection (as the doctor had said). I was jogging again less than two weeks after my release from the hospital. Before the shunt surgery I could barely put on foot in front of the other. Hydrocephalus compounds equilibrium problems.

There was a time not long after my surgeries that I suspected I might have a CSF leak. I remember my doctor saying that with the shunt in place it was unlikely that I had a CSF leak, but he examined me anyway. It was determined that it was drainage from my sinuses. One of the things me made me do was bend over as far as I could while sitting and watch for any dribbling from my nose.

How big was your tumor? It's the larger growths that seem to effect CSF pressure more than the smaller ones.

[jrlf]

Hi, wondering how was your situation solved. I have a similar situation. I can't be sure I feel something in the back of my throat but sometimes feel as if my nose was full behind it...(hard to explain).  However, MRI shows no signs of a leak. I feel, similarly to you, a drop develop every once in a while (when head is facing down), but nothing drips (the nostril varies, which is uncommon).
Before, I had constant drops coming out of my nose, always left nostril. I had a second surgery to patch it up.
The doctors tell me to forget about it. That it doesn't exist. However, the fear of getting meningitis sometimes consumes my head.

Thank you