Author Topic: How to identify true CSF leak?  (Read 1208 times)

tarheelEH

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How to identify true CSF leak?
« on: February 07, 2018, 07:58:37 pm »
I am 4 plus months post translab, recently I experienced clear fluid comes from AN side's nostril. It comes drop wise and is not like running water from faucet, a standard CSF leak diagnosis.  And when I bend my head forward to the knee for 2-3 minutes, there is no fluid drip out from nose other than feel the cranial pressure.  The drops do come down spontaneously from time to time during the day when I stand up or sit. I can collect about 2-3 cc  clear dripping fluid daily.  I would like to know whether this is truly a CSF leak? Has any one with similar situation of drops flow out of nostril months after surgery. Is this serious enough that need immediately medical care? Do you need to have this problem fixed?   By the way I started join yoga class and body strengthen workout about two weeks ago and then this incident happened just after that one time exercise workout . So can it be coincidently due to I gave too much pressure to the healing brain and causing the leak(dripping)? Can this symptom be healed with time by its own?
Thanks to your any input to help me resolve my concern.
11/20/2016:at age 68, SSHL, found 1.1 cm left IAC AN
6/26/2017: rapid tumor growth to 1.6 cm
9/19/2017: Translab by Drs. Friedman & Giannotta
2/26/2018:canaloplasty meatus repair for CSF leak by Dr. Friedman

jrlf

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  • AN on left side. Retrosigmoid surgery Jan 2019.
Re: How to identify true CSF leak?
« Reply #1 on: July 05, 2019, 10:43:33 am »
Hi, I wonder if you had it figured out. I have a very similar situation. I feel some pressure and a have a few drops a day showing up inside my nose (90% of the times in the AN side). They won't be enough to drip out, really. I didn't collect them in any way. I also feel as if something was accumulating behind my nose, like when you have a cold. No funny taste (metallic/salty).
Doctors are adamant about CSF leak only being the case when you have big rhinorhea. I can bend down for 2, 3 minutes and no more than a drop will be felt inside my nose at a time.
After 5+ months, I will feel vertigo when tilting my head up and down (left/right not that much).
A lot of the signs are reported as possible CSF but the constant dripping is what doctors relate more and I can't really prove anything. I even bought the Glucose strips but don't really have enough liquid to test with.
There are days when I almost forget it but I still avoid bending down for things (consciously or unconsciously) and it takes a toll emotionally. I feel I will never be back to anything close to my previous normal.
Sorry for the long winded post.
Best Regards,
J
AN on left side. Retrosigmoid surgery Jan 2019.
CSF leaf fixed with second surgery 18 days after the first one.
Paranoid about having CSF leak again. :)
Back to work in 4 months.

harbormom

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Re: How to identify true CSF leak?
« Reply #2 on: July 10, 2019, 08:06:14 pm »
No one on here can confirm whether your symptoms are related to a CSF leak.  if you are concerned, you need to contact your surgeon.  He or she will evaluate you and probably order a scan.  A leak can be seen in the scan.

My surgery was in Sept. 2018.  By November 2018, I noticed dripping from the left nostril (tumor was on the left side) whenever I exerted myself or when ever my head was tilted downward---for example, vacuuming, washing the dishes, leaning over while cleaning, etc.  One tell tale sign is dripping from one nostril when your head is tilted forward.   I ended up being admitted through the ER because at the time i was being evaluated by the surgeon, I also had a bad headache and was feeling very off.  During the appointment, I showed signs of a leak (dripping from one nostril when he asked me to bend my head over) and the scan showed a leak.  He wanted me admitted ASAP because he was concerned about the headache and the chance of it possibly being the start of meningitis (I live far away from the hospital--almost a 2 hour drive--and that's too long to wait if meningitis were to set in during that night).   I ended up having CSF repair surgery a day after being admitted. 

in short, don't rely on us.  if you have concerns about a leak, call your surgeon. 

jrlf

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  • AN on left side. Retrosigmoid surgery Jan 2019.
Re: How to identify true CSF leak?
« Reply #3 on: July 11, 2019, 12:31:03 pm »
No one on here can confirm whether your symptoms are related to a CSF leak.  if you are concerned, you need to contact your surgeon.  He or she will evaluate you and probably order a scan.  A leak can be seen in the scan.

My surgery was in Sept. 2018.  By November 2018, I noticed dripping from the left nostril (tumor was on the left side) whenever I exerted myself or when ever my head was tilted downward---for example, vacuuming, washing the dishes, leaning over while cleaning, etc.  One tell tale sign is dripping from one nostril when your head is tilted forward.   I ended up being admitted through the ER because at the time i was being evaluated by the surgeon, I also had a bad headache and was feeling very off.  During the appointment, I showed signs of a leak (dripping from one nostril when he asked me to bend my head over) and the scan showed a leak.  He wanted me admitted ASAP because he was concerned about the headache and the chance of it possibly being the start of meningitis (I live far away from the hospital--almost a 2 hour drive--and that's too long to wait if meningitis were to set in during that night).   I ended up having CSF repair surgery a day after being admitted. 

in short, don't rely on us.  if you have concerns about a leak, call your surgeon.
Hi, I agree 100%. And in fact, in my case, I have reported the "wonkyness" and the eventual drop (no continue dripping as I had before) to the surgeon. I am not sure if it is because of how the system works around here (Canada), where things work pretty well if you have a simple cold or a major surgery, but anything in between, it is pretty hard to get it looked at (until it gets really serious or goes away).
I was just looking for some baseline on what could be normal or not. I know it is not exact and won't settle just with the info here.
I really appreciate the feedback.
Cheers,
J
AN on left side. Retrosigmoid surgery Jan 2019.
CSF leaf fixed with second surgery 18 days after the first one.
Paranoid about having CSF leak again. :)
Back to work in 4 months.

harbormom

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Re: How to identify true CSF leak?
« Reply #4 on: July 13, 2019, 11:11:05 pm »
The occasional drop wouldn't be consistent with a CSF leak.  Multiple drops of clear fluid  in row from one nostril when leaning your head downward may  be a sign of a CSF leak.  It doesn't have to be gushing or a steady stream of liquid from one nostril.  Sit in a chair with your knees bent at a 90 degree angle.  Then, lean your head forward and down for about 30 sec. or so.  Does your nose drip more than one drop consecutively from one nostril?  Do you notice the drops fall from same side (either left or right) all of the time?  The key is--dripping from one side the nose only.  Do you find yourself wiping the same nostril many times during the day?  if so, then it may be something to let your surgeon know. 
« Last Edit: July 13, 2019, 11:16:12 pm by harbormom »

jrlf

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  • AN on left side. Retrosigmoid surgery Jan 2019.
Re: How to identify true CSF leak?
« Reply #5 on: July 17, 2019, 07:24:12 am »
The occasional drop wouldn't be consistent with a CSF leak.  Multiple drops of clear fluid  in row from one nostril when leaning your head downward may  be a sign of a CSF leak.  It doesn't have to be gushing or a steady stream of liquid from one nostril.  Sit in a chair with your knees bent at a 90 degree angle.  Then, lean your head forward and down for about 30 sec. or so.  Does your nose drip more than one drop consecutively from one nostril?  Do you notice the drops fall from same side (either left or right) all of the time?  The key is--dripping from one side the nose only.  Do you find yourself wiping the same nostril many times during the day?  if so, then it may be something to let your surgeon know. 
Thank you. Like you said, I never have more than one consecutive drop in a short period of time. It takes a while for the drop 'to show up again'. It is always on my AN side though. I have sent a note to the doctor anyways. Let's see how it goes.
Thank you again.
AN on left side. Retrosigmoid surgery Jan 2019.
CSF leaf fixed with second surgery 18 days after the first one.
Paranoid about having CSF leak again. :)
Back to work in 4 months.