CFS Leak info?

[eugd]

This is a question to those who had CFS Leaks post surgery, or a few months after the procedure.  How does a CFS leak present when it comes from the nose?  Does it flow continuous, or is it little drops at a time upon exertion?  How much quantity usually comes out? did your ear feel full? did any fluid come out of your ear? was  it thick or thin liquids? Is it clear or has a color? Did it have a specific taste? What did you feel before the leak occurred? Does it mix with nasal mucus and presents like the consistency when you blow your nose?

Not enough information on this site or the internet about how a CFS leak presents, and how it looks.  I found a lot of information on the symptoms and treatment of a CFS leak.  However, no one has posted a good description on how to spot them and how to distinguish it from regular symptoms resulting from allergies?
This could be very beneficial to us all, thanks for your anticipated help.

[Cheryl R]

I had a CSF leak a little over a year ago 2 weeks after my translab.      Mine came as a drip,drip,drip from the nose esp when bent over.    It did not run.       I had mid fossa in 2001 and my nose ran horridly esp when was active or warm and I lived in fear of it being a leak but my surgeon says to sit with the head bent over and see if it dripped out and it did not.                Last year it did.    It was just a clear fluid.      The only way you identify it for sure is a lab test called beta transferrin and it had to be sent elsewhere from my larger teaching hospital.                   They had to collect 5 cc and it took a bit of sitting bent over to get enough.                 They think my leak was due to their use of a different colloidal implant called Durepair as 3 of us had leaks so they were going back to the one they had used before.               They put me on bedrest for a day with no change so had to go back in and have surgery again to redo it and put more fat in.     They took out the ear drum this time and put muscle over it and really packed the eustachian tube tight with fat also.
 I did not have asalty taste in the throat or any headache.       
 Hope this helps.   It doesn't answer all your questions but gives my own personal experience.   My surgery last year was for a whole new tumor and not a regrowth.   I am NF2 and have had surgery twice on the one side and none on the other yet.
                                           Cheryl  R

[Yvette]

Oh Cheryl, I can't believe what you've been through! What is your status now? Yvette

[Cheryl R]

I have been lucky to recover easily from my surgeries and was back to work last year June 1 after the last surgery being April 7th.     I only work part time though as a nurse in a snall rural hospital.
I have the usual AN annoyances but live a normal life and keep busy.           I am losing more hearing on the side with the tumor which is very frustrating but for now hanging in there.       I can well relate to everyones stories of balance problems and SSD hearing problems.          One just has to take it one day at a time.     
                                                       Cheryl R

[Yvette]

Glad to hear it Cheryl. I guess patience is something AN patients are forced to learn. Take care, Yvette

[Gennysmom]

Mine came as a drip from my nose as well.  It was very watery, kind of like when your nose runs over a hot bowl of soup, but more drippy.  The test is to sit on a chair and lean over about 45 degrees and hold a napkin under your nose.  If it drips on occasion, it's probably just your autonomic nervous system doing something weird.  If it's continual drip, drip, drip, especially with a throbbing headache, it's probably a leak.  Either way, you should check both with your doctor the first time.  A lot of people say it was salty, but I didn't think so...just different than anything I've tasted....and it dried out the inside of my nose pretty good.  It felt like I could get a nosebleed easy.  I know of others who have leaked from the surgical site, and they would soak their pillows or clothing.  If anyone has anything like this, even if it's just your nervous system, get to the Doc soon....if the leak goes untreated it can develop into meningitis. 

[Static]

Mine was a drip but only from the right side (AN side) of my nose, not the left.  If I leaned over or bent my head forward it would drip.  When I told the doctor about it, I was sent for a plegit study where they gave me a spinal tap with a type of bright green radioactive dye and stuffed wads of cotton up my nose.  They took pictures of my spine before and after they injected the dye, then sent me home.  I went back 12 or 18 hours later and the cotton was taken out.  As soon as I saw the cotton, I knew the test results would be positive as the cotton was bright green.  The results were positive.  If you suspect a leak, tell your doctor.
~Karen

[eugd]

thanks for your input, Im sure this would not only help myself but others in the future who stumble upon the site looking for info...

[staypoz]

I had a CSF leak from my ear.  My ear felt wet and and my leak dripped.  I was a couple of days post-op and still in the hospital when my leak developed and it was repaired immediately. 

staypoz

[nikondude]

I am now 7 weeks post-op  . I had a csf leak but it presented itself by giving me terrible spinal headaches 11/10. I was okay when lying prone but if I sat or stood up it went from 0 to 10 instantly. This went on for 10 days ! After 10 days my surgeon ordered a blood patch epidural. This involved injecting 20 ml of my own blood into my epidural space. It gave me instant relief .

If any one gets these types of headaches request that you have this procedure asap. Will save you lots of agony.

Gerry

[Boppie]

The desicription here is very helpful.  My nose drips when I chew, and even though I've read lots of other posts about same, I've never been able to distinguish the difference between "nose runs when eating" and fuid leak in a drip, drip quantity (CFS leak).  Thanks for the post.

[eugd]

Boppie, how much amount came out? did it come out any other time? what consistency was there fluid, was it thin or thick?  and how long did it last after you finished eating? ...thanks for your input..

[Boppie]

I am 18 months post op Translab.  Early post op I had some minor facial weakness.  I experienced a lot of nose and eye running in the first four months.  My AN nostril runs and my eye waters when I eat chrunchy or chewy foods.  On occasion it runs if I eat soft foods.  The fluid is very thin, like water.  I've had to stop and blot my nostril with my napkin or keenex many times.  Sometimes I just blow my nose and the running stops for the remainder of the meal.   I never have fevers or headaches.  My AN eye tears but does not make crying tears at all.  My tongue goes through periods of a few days where it tastes strangely.  This nose running and tongue problem are intermittent and very slowly getting better.  I attribute all of my symptoms to the facial nerve regeneration.

How much amount comes out?..the size of a dime on a tissue. It stops coming as soon as I am finished chewing. 

I've had no complications with CSF.  My tumor was medium sized and just touching the brain stem.  My brain was not retracted.

I followed many other posters who have had the nose running problem when eating.  An explanation I've heard is that the regenerating nerve endings get crossed up, misfire, and do somebody else's  job.     I don't worry about it.   

[Windsong]

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.....

This is a question to those who had CFS Leaks post surgery, or a few months after the procedure.  How does a CFS leak present when it comes from the nose?  Does it flow continuous, or is it little drops at a time upon exertion?  How much quantity usually comes out? did your ear feel full? did any fluid come out of your ear? was  it thick or thin liquids? Is it clear or has a color? Did it have a specific taste? What did you feel before the leak occurred? Does it mix with nasal mucus and presents like the consistency when you blow your nose?

Not enough information on this site or the internet about how a CFS leak presents, and how it looks.  I found a lot of information on the symptoms and treatment of a CFS leak.  However, no one has posted a good description on how to spot them and how to distinguish it from regular symptoms resulting from allergies?
This could be very beneficial to us all, thanks for your anticipated help.

[Cheryl R]

  Are you coming to the symposium by any chance?      That would be a good question for the drs to answer during the general question and answer time.               If you aren't then I will try to remember to.                I am assuming it is from trauma of the facial nerve.      Was your AN  just in the IAC?                                   Cheryl R