Author Topic: CSF Leak How Do you Know?  (Read 30007 times)

mindyandy

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CSF Leak How Do you Know?
« on: December 08, 2011, 08:29:54 am »
I'm curious. How do you know if you have this? My nose drips all the time and if I were to have surgery how would I know if its just my nose leaking or if I have a CSF leak?

Thanks guys
Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Cheryl R

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Re: CSF Leak How Do you Know?
« Reply #1 on: December 08, 2011, 09:32:14 am »
Mindy, My surgeon way to check is to bend your head way over while sitting and if it drips like a faucet.    I did have a leak and that is how it did.          I had no headache,salty taste like some do.          I also have runny nose from being too warm and active and most of the time when eating.        But not when do the bend over test.            Sometimes you need to sit 3 or 4 minutes too.     If you do have surgery then your dr should tell you.       Some have the CSF in the incision and be swollen and fluid coming from the incision.                        My leak was due to the new type of a colloidal implant they used in the tumor area to hold the area together.      3 people had leaks due to it so they went back to previous one used.                   I did have to have surgery again but wasn't as long as one as the tumor.    Not in ICU then either.         
                                                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Brewers7

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Re: CSF Leak How Do you Know?
« Reply #2 on: December 08, 2011, 10:23:04 am »
Mindy,
I leaked out my AN side ear.
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

mindyandy

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Re: CSF Leak How Do you Know?
« Reply #3 on: December 08, 2011, 05:07:34 pm »
thanks guys. The information is wonderful to have. I am so very thankful for all of you guys on this forum. If I were to get my meningitis shot would this benefit me?
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

mk

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Re: CSF Leak How Do you Know?
« Reply #4 on: December 22, 2011, 09:32:18 pm »
I was wondering. When you have a CSF leak, is it only through one nostril on the AN side? I suffer from allergic rhinitis, and it has been really bad this last month. One of my nostrils is constantly runny, but it is the non-AN side. The other (AN side) is the opposite - very dry, and I use a lubricating gel to ease the dryness. But I am always worried about potential CSF leak - so my question to those of you who had a CSF leak through the nose is if you had it on the AN side nostril only or both.

Thank you,
Marianna

GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Cheryl R

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Re: CSF Leak How Do you Know?
« Reply #5 on: December 22, 2011, 11:26:48 pm »
It would be on the AN side.     I suppose in a rare circumstance and something weird inside,could be on the opposite but never heard of it.           I  have the nose running alot with eating or being too warm and active and it is a nuisance.                                Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

maryh

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Re: CSF Leak How Do you Know?
« Reply #6 on: January 02, 2012, 11:41:47 pm »
My csf leak was out of the nostril on the opposite side of the surgery site.  Before surgery, I had a runny nose most of the time, so after surgery I though it was just the normal state of affairs. 

Sometimes the runny discharge won't benot clear, sometimes you can taste something a little bit off in the back of your throat.  I was dripping pretty consistently (more volume than the regular runny nose problem) which was evidence of the leak.

I had two csf leaks.  The first one was repaired, the second time the doctors went in to repair the eustachian tube because it wasn't draining fluid properly.

Mary
4 cm acoustic neuroma, surgery 7/2011 in Seattle, WA with Dr. Kyle Kim and Dr. David Mehlum. Hearing loss in left ear. Facial droop resolved.  Lots of post-surgery complications-csf leaks, bacterial meningitis, blood infection, peritonitis caused by infected lumbar shunt (which was removed)