Author Topic: CSF leak through nose?  (Read 10785 times)

Tamara

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CSF leak through nose?
« on: August 14, 2008, 12:07:37 pm »
Jeepers, I hate to bring this up, after the CSF incision leak that I had.  BUT, I'm now getting drainage through the nose when I bend over.  It happened a few times, and I was able to deny my way out of it, but now I think I might really have another leak.  Like the first one wasn't fun enough.  I suppose I'll drop in to see my dr. next week, but what I want to know is, what do they do if it is determined that you have a leak??  If anyone tells me that they do surgery, I think I'll stop bending over and continue with the denial :-\

Tammy
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

MAlegant

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Re: CSF leak through nose?
« Reply #1 on: August 14, 2008, 12:32:27 pm »
Hi,
They do various things to control CSF leaks (others will chime in) but denial is not good.  Call the doctor....
Marci
(thinking dry, dry thoughts for you)
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Debbi

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Re: CSF leak through nose?
« Reply #2 on: August 14, 2008, 03:19:10 pm »
Tam-

I agree with Marci - call your doctor!!  Denial is not an option.  Your nose leaking may be nothing more than sinuses drainage, but if it is CSF, you don't want to risk the complications of letting that go.  I will tel you that my nose drips a lot more than it did pre-surgery and it is NOT CSF, but let your docs make the call!

Deb, sending you good thoughts!
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Tamara

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Re: CSF leak through nose?
« Reply #3 on: August 14, 2008, 03:41:15 pm »
I called my dr and I go in Monday morning.  I told him I AM going on my one and only vacation tomorrow through Sunday, and he gave me the OK to do that as long as I have no other symptoms, like a headache (which I don't).  I'm still curious about the options for fixing this, if anyone knows?  Water pills again, maybe?

I'll be surprised if this isn't CSF, though...

Tam
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

Jim Scott

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Re: CSF leak through nose?
« Reply #4 on: August 14, 2008, 04:11:01 pm »
Tammy:

I'm not an expert on CSF leaks (never had one) but I think a shunt may be the next step to handle your (possible) CSF leak.  Let's hope you aren't 'leaking' and that this won't be an issue.  Meanwhile, try to enjoy your vacation.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

CROOKEDSMILE

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Re: CSF leak through nose?
« Reply #5 on: August 14, 2008, 05:53:04 pm »
Hi Tamara,
They thought that I also had a CSF leak  because I was swallowing SALTY like drainage down the back of my throat. They say CSF fluid tastes very salty. ALso they said that you would have a headache when upright but that would resolve with laying flat. There are many options to treat leaks......bedrest, medication, shunt, surgery to repair leak, close observation, etc. You DO NOT want to ignore this because a risk of CSF leak is meningitis which is infection of the brain/spine which can be fatal. My doctor worked me in immediately when I called and told him my symptoms. I did have the terrible headache that resolved with laying flat along with the salty drainage. Thank God is was not a leak just an overactive tear gland during nerve recovery and the typical post op headache. I have heard of people getting leaks many months after surgery so keep an eye on it.
crookedsmile

leapyrtwins

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Re: CSF leak through nose?
« Reply #6 on: August 15, 2008, 03:09:25 pm »
Tammy -

sorry to hear about the leak.  I didn't have one myself, but from what I understand, they can occur through the nose so I'm glad you called your doctor and will be seeing him Monday morning.

Please keep us updated,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

stevek

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Re: CSF leak through nose?
« Reply #7 on: August 15, 2008, 04:24:54 pm »
Tammy,

CSF leak is no joke. Mine started 3 days post op & the Dr.'s took immediate action.  I had a shunt & drain.  Very uncomfortable few days.  I hope you do not have one.  But if so you just have to deal & face it head on.  You have come this far.  That's what I had to keep telling myself.  Just keep fighting.  I wish you the best.
Diagnosed 5/14/08   4cmx2.8cmx3.1cm
16 hr. Translab 6/9/08
Spinal Fluid Leak 6/12, under control & released 6/16
Dr. Hillman, Dr.Chen, & Dr. Aziz @ Allegheny General in Pitt.
2cm regrowth treated with Stereotactic Radiosurgery & released 6/8/11
Dr. Fuhrer, Dr. Chen, & Dr. Hillman @ AGH

Tamara

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Re: CSF leak through nose?
« Reply #8 on: August 17, 2008, 01:34:02 pm »
Strangely, ever since I made the appointment, I haven't had the drainage occur.  I should have kept on denying a bit longer ;).  I'll cancel the appointment if I don't have the drainage occur again.  Thanks for all the support!

Tam
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

leapyrtwins

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Re: CSF leak through nose?
« Reply #9 on: August 17, 2008, 10:01:17 pm »
Tammy -

this sound similar to the "I'm getting my haircut this afternoon so this morning my hair looks fantastic" scenario that I often encounter  ::)  It always makes me wonder if I should cancel my appointment, but in the end I decide to keep it and I'm thankful I did.   

You might want to keep your doctor's appointment just to be on the safe side.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

lacey7

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Re: CSF leak through nose?
« Reply #10 on: August 17, 2008, 10:12:53 pm »
Keep the doctor appt. no matter what!!  I had the CSF leak 3 days after I got home.  It's very thin and clear.  You can tell it isn't sinus.  You can also feel a "leakage" in the back of your throat.  Like every few minutes I had to swallow.  Mine was thru my nose, also.  If you can do this....if it leaks alittle again out of your nose, put a kleenex up to the leak, and just put your tongue on it.  If it tasts salty, then it DEFINITELY is a leak.  Nothing that I EVER had come out of my nose was that clear and thin.  I had forgotten that this could happen, but I knew immediately what it was.  So, keep the appt. 
For me, they redid the surgery.  Had to repack the head, and also had to open up my tummy again.  Then had a drainage tube for 5 days.
You NEED to take care of it, no matter how they do it.  You've come this far.....you HAVE to finish up the rest......or like they said, it could mean menningitis.
Please keep us informed.  I had my second surgery July 9th.  It was only 3 hours surgery.
I'm praying for you.
Lacey
Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

Tamara

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Re: CSF leak through nose?
« Reply #11 on: August 18, 2008, 06:48:28 am »
Thanks for the replies - I called and the dr confirmed my suspicion that there wasn't anything to be gained by coming in when I'm no longer draining.  Of course, if it starts in again, I'll go in pronto.  I guess all's well that ends well.  Thanks again everyone!

Tammy
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

Pooter

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Re: CSF leak through nose?
« Reply #12 on: August 18, 2008, 12:14:34 pm »
Yikes Tammy!  I just saw this thread!  I'm sorry about the leak, but I'm glad it's cleared up so far.  Here's to no more leaks!

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

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Debbi

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Re: CSF leak through nose?
« Reply #13 on: August 18, 2008, 01:04:06 pm »
Tammy-
Glad that you seem to have averted a crisis.  Just keep an eye/nose on it!  I asked my surgeons how I would know if I had a CSF leak and Dr. Roland said that I should sit on a chair, feet on floor and elbosw resting on knees.  He said to then rest my forehead on my hands with my face pointing towards my feet/the ground.  He said that if I had a CSF leak, I would know within 5 minutes because my nose would be running and dripping on the floor.  I am sure that this isn't the most medically accurate test, but it was good enough for me and I have done it a few times when I wasn't sure why my nose was running.

I'm still freaked out by sneezing, btw.   ;D

Debbi, sending dry thoughts your way...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com