CFS Leak info?

[Gennysmom]

Eye, nose and saliva drips are all a function of the autonomic nervous system, and can go weird when the nerve is healing.  Right after I came home from my CSF leak, the next day I had drips, but it had stopped by the time I got to the doc.  They were almost identical to my CSF leak drips in consistency and taste, the only difference is I didn't have a headache and they stopped.  My doctor told me about the misfirings in the autonomic nervous system causing the drips.  I'm almost a year out and still find that eating chewy or crunchy foods fire them up....but I have to say that feels like more of a runny nose than a drippy nose, if that makes any sense.  It's hard to judge if you've never experienced it, but better safe than sorry letting the doctor diagnose just what it is, at least the first go round with it.  It's better than doing battle with meningitis!

[Windsong]

Cheryl, I'm not sure to whom your last questions were directed but I wanted to say thanks for your  own input here....

If i lived near  where the symposium is going to be I'd go but alas i am too far. So i do hope you ask these questions about csf leak.

I found myself quite perplexed about a drip that has happened at isolated times for me and also as a daily thing for a few days spread out over time and over the last two years,  as on occassion they have happened also while leaning over... one time for example would be when i was bent over cleaning something and another was when i bent over to my purse on this bench to get something for someone and this big drip came out of no where and dropped down from my nose and during both  those times I wouldn't say I had a feeling of having a cold generally  at all where that might happen so really I did not have a clue about what was going on....I don't even remember if i even asked a doc about it later as by the time i see one I forget what happened days earlier....and who is going to call one's doc to say hey i bent over and my nose dripped ( even if it is weird)....

Funny thing is I was reading this suspense novel maybe a year ago and in it ( along with super duper suspense/thriller stuff ) there was this patient in this hospital who had a csf leak and the doc in the story was waiting for a bit to see if it would settle and oh ya the patient in the story had her head elevated so believe it or not i headed for rest when i had my drippy nose that didn't seem like a cold and i always got better after resting....wish i could remember which book that was lol... but i don't...

interesting also that when i don't have any drip of any kind my face also seems just fine, no numbness or weird happenings on  the An side..... right now I am fine.... other than a mild ear ache of some dumb sort....if it continues I will have it checked out....

Keep well,
windsong

[Cheryl R]

Very interesting about your experience.        I am guessing that some type of swelling or effect on the facial nerve could be the cause.     I have never heard of radiation causing sinus problems but strange things do seem to happen here and there with AN treatment so who knows.
    I will ask about it.                       Cheryl R

[itsjustdeb]

I had AN surgery back in March of 2000 (translab approach). About three weeks after the surgery, I noticed a thin, colorless fluid would drip from my nose every time I bent forward or held my head down. I returned to the doctor and he had me hold my chin on my chest for a minute with a tissue up to my nose. Sure enough, spinal fluid leaked from my nose when I did that. I was readmitted to the hospital and I had a lumbar drain inserted in my back. They drained spinal fluid for a week while I lay at a 30 degree angle. This was to take the pressure from the spinal fluid off of my surgery site and give it a chance to heal. However, because I had swelling around my facial nerve, I was also on steroids. My doctor thinks the steroids kept my surgery site from healing properly. After a week, the lumbar drain was removed. When I leaned forward, I still had a CSF leak. I ended up going back into surgery so that the leak could be repaired. That was a blessing in disguise. With my first surgery, part of the AN was left because it was wrapped around my facial nerve. When my doctor went back in, the AN had come off the facial nerve and he was able to remove it. I had another lumbar drain placed in my back and spent another week at a 30 degree angle. I have not had any signs of a CSF leak since then. From my experience, I do remember a salty, metalic taste with the leak.

[Sue]

Okay, I had radiation also - GK a year ago last April.  My AN side is quite drippy and I've come to the conclusion that it must have something to do with the AN and the nerves being messed with.  I mean if this were allergies (which I do have some of that too) why don't BOTH sides leak?  I mean....this is crazy.  I need to have stock in Puffs tissue!! 

Sue in Vancouver USA

Thanks for your post... I've been waiting a long time for more about this nose leak.....you see i did not have surgery, I had radiation....and i have given up cracking jokes about having the longest cold in history.....which is what I did for a while... (like a year or more) and the rest of the time I simply shut up as no one had an answer for me... or perhaps i wasn't persistent enough in asking about this nose drip? I always did find it peculiar that the An side dripped and not the other at the same time (though both have, yes, but it's the An side that drips consistently.... although of course not all the time thank gawd as I was not too happy about walking around with a kleenex and mopping at times).....)

and sure, I noticed that it might have dripped more when i ate something... but then it would drip regardless of what i was doing....and i would often eat with no problem too.... then it would drip for some days at any ole time and then not others.... at one point I thought ok, i have developed an allergy or something.... but since I have not changed anything in my environment or in what i eat or with what soaps i use and all that sort of stuff, I now think well nope it's not an allergy so what is it?

I have no idea but I sure like the times where i do not have to worry about a drip from my nose....
would be nice to know what exactly causes that.....