Author Topic: CFS Leak - what is it?  (Read 2759 times)

kathleen anna

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CFS Leak - what is it?
« on: October 08, 2010, 11:26:41 am »
Hi again.....I am just curious as to what exactly a CFS leak is?  And how do you know if you have it?  The nurses told me that there would be leakage from the incision or from the nose.  Is is a constant flow?  Or just a nasal drip?  Is it consistant, or just intermittant?  I have noticed that quite a few people have had surgery to stop the leak, and I was just wondering what it is? 

Thanks......Kathleen Anna

Jim Scott

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Re: CFS Leak - what is it?
« Reply #1 on: October 08, 2010, 01:03:36 pm »
Kathleen Anna ~

Cerebrospinal fluid leaks occur in less than 10% of all post-op AN surgical patients.  The CSF usually 'leaks' from the nose, especially when bending over.  It is not exactly 'constant', but frequent - and annoying, or so I would assume

The leak often is caused by a 'tear' in the dura that has to be re-stitched by a physician to stop the leak.   Sometimes, the tear is tiny and will heal on it's own.   That's about the extent of my limited knowledge about CSF leaks (I didn't experience a CSF leak).  

I trust this bit of information will suffice and I'm confident that there will be other responses that may be superior to this one.  There is also the internet.   Google is our friend.  :)

Jim
« Last Edit: October 08, 2010, 03:07:23 pm by Jim Scott »
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.

kiwi

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Re: CFS Leak - what is it?
« Reply #2 on: October 08, 2010, 04:45:08 pm »
I don't know why the nurses would have said such a thing, it isn't usually something that is predicted. Its a complication of surgery and as Jim said only 10% are unlucky enough to get it.  At first its more annoying and embarassing but eventually its becomes unbearably painful. I had a leak for 5 weeks before I had surgery and it started off as a drip then it became a nice flow, I was in isolation due to meningitis risk. My leak started 3 weeks after surgery and I was told that a leak that starts that long after surgery can only be repaired by surgery and that there was no way that it would heal itself.

There is a lot more about CSF leaks on this site as I remember asking all these questions myself when I was leaking.

Jacqui
3.6cm AN Left side diagnosed Dec 09.
Translab surgery 16th March 2010
Left SSD, Facial Paralysis
CSF Leak surgery 11th May 2010

leapyrtwins

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Re: CFS Leak - what is it?
« Reply #3 on: October 09, 2010, 10:28:39 pm »
I don't think the nurses told Kathleen Anna that she'd have a CSF leak; the way I understand her post is that they were telling her what to look out for - which is part of the nurses' job. 

After my AN surgery, my docs and my nurses reviewed the signs of a CSF leak with me - just in case.

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

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Suebedo

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Re: CFS Leak - what is it?
« Reply #4 on: October 21, 2010, 10:51:29 am »
I had one following my surgery - a couple of days after, the doc asked me to turn to lay on my surgery side so he could look at something and stuff started running out my ear. Fixed by pumping fluid out of my spine for three days and then a couple more for it to heal. No problems now 3 weeks post surgery.
Diagnosed with AN June 10, 2009. Mid fossa surgery 9/30/10 at University of MN. Tumor over an inch at that time. CSF leak after surgery. Eight years later, regrowth. Starting the decisions all over again.

Lizard

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Re: CFS Leak - what is it?
« Reply #5 on: October 21, 2010, 11:19:07 am »
I leaked too, now that I look back it seems like a distant foggy memory, but what I do remember is that the fluid was going down the back of my throat and it was salty to taste.  I ended up with a spinal headache that had me laid out flat on my back, and then I required surgery to block up the air pockets behind my ear which is where the original "glue" didn't hold.  Four more days in the hospital and I was good as new...well good as post AN surgery can be. 

Not sure where your curiosity stems from, perhaps the nurses have just made you a little paranoid or your nose is running or something...

I also just want to note that since my surgery my nose runs frequently, not sure why, but I have my theories.  I do not think there is any CSF involved or anything, but I am not alone.  Another Forumite has the same issue and neither of us really know why.  Try not to worry about it, and if you are really concerned call your ENT...or I know it sounds gross, but you can always taste the fluid coming out of your nose for a salty taste...
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

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Brewers7

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Re: CFS Leak - what is it?
« Reply #6 on: October 21, 2010, 11:30:16 am »
My CSF showed up as a dirty leakage from my AN ear a few days after surgery.  The surgeons were watching for it and repaired it quickly.
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