Post-Treatment > Post-Treatment

CFS Leak info?

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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

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