CSF leak 1 year after surgery

[rntiggergirl]

Hi
Has anyone had a CSF leak several months to a year after surgery? I had my middle fossa surgery 12/03 and developed a CSF leak post op in the hospital w/ spinal drain. Then I started leaking again last November after getting very sick w/ vomiting. Has anyone else ever had this happen?

[Joy]

I have wondered what the symptom of the CSF leak is.  I have a small leak on the outside of my left ear which happens when I chew food but, don't know if it is that problem or not.

[Wendy]

CSF has not been my fate, but a month after surgery I had a scare and saw one of my surgeons.  He told me it was good that I came in to have him check me for CSF and also said CSF can develop long after surgery.  I think I remember him saying he had one case where it developed two years later, but I am not sure my memory is correct; the point is that CSF can occur later, or be discovered only later, so it is always important to check.  Better a trip to the doctor when not needed than no trip when it is needed.  Hope this helps some.  Good luck.
Wendy

[antoinette]

One year after surgery, if you did not have problem all along, CF leaks are not what i would suspect first. I know that there is a communication between the throat and the ear, could it be saliva?
Anyway, you should immediatly report to your specialist, not to a GP. unless you have to pass thru him to get appointment to your surgeon. But you are still his responsability after one year if it comes from the ear and perhaps the scar.
If you have no other symptoms, like listlessness, nausea, and increase tinnitus, do not worry too much as worrying will increase any symptoms. Do not wait to make that appointment and make sure it is quick if not immediate.
antoinette

[Becky]

Joy,
If you have a leak around your ear, get it checked out by an ent specialist. 

I have read that many times small csf leaks resolve on their own, but anytime there is a leak you risk getting meningitis.  Meningitis is an infection of the surrounding brain tissue, and can be fatal.  You do not want an opening into the environment of the brain (contained in csf fluid) to our invironment where there are many types of infectuous bacteria.  This is your brain we're talking about, which is continually bathed in the csf fluid. 

Definately have an ent specialist take a look.  Bring along gum to chew, so you can show him/her how it happens.
Becky

[Katja]

Hi there!
As from my experience you can have CSF leak. I had my operation Jun04. In Jul I had leak which stopped. Then around 15th Aug04 it stated again from my ear. I had Meningitis, very weak one for my good. In Sept04 I had opeation for CSF leak. From Nov04 my nose was runny, I thought it was just small flu. I made test in Feb05 discovering another CSF leak. I had my 3rd surgery Mar05. Now I think that I am ok... Anyway, I still sometimes when lying on right side I feel like my ear is filling with fluid.. Can this be possible or I my imagination just playing? I think you better get that fluid checked to be sure. There is some lab test to find out for sure if it is CSF. From Cyprus I could not do this but I did sent my fluid with courier to UK where I had also all my operations. Good Luck!

[RadiantStar]

This probably is/was one of my BIGGEST fears after coming home from surgery.  I was completely obsessed by it.  When I talked to the Neurosurgeon about it, he told us that the further out from surgery, the less likely it was to happen, BUT it would always be a chance of happening.  I do occassionally think about it though, mostly when I'm doing some sort of exercise, bending over, stuff like that.  But I'm not AS crazy obsessed as I once was.  Thanks for letting me know I'm not the only one concerned.

[rntiggergirl]

Hi everyone-
thanks for all the concern.  I have been seen by my surgeon and he thinks it may be an intermittant leak. I will be having a radionuclide cisternogram on Monday.  The procedure consists of injecting radioactive material into my spine and then scaning at 3 hrs to check for a leak, then they put small cotton peices in my nose and send me home to come back in 24hrs for another scan and to remove the cotton to check if any radioactive csf leaked on the cotton.  I am not looking forward to the test but they stay this the best way to diagnosis an intermittant leak, approximately 90% accurate. If it is possitive I will be returning to surgery (#3) and if negative we will wait and watch.
I will let you know how it goes. 
Cheryl

[Joy]

My goodness!  I did not know you would have to go through all of that to find the leak.  Is there not a simpler way?  I have difficulty breathing so I know I could not have cotton put in my nose for a test.  I truly hope the test goes okay for you. 

[LBM]

Can anyone please tell me what are the signs and symptoms of a CSF leak. Thank you

[josnik]

I'm curious also as to the signs of a CSF leak. Also is the chance of occurance well after surgery greater if you had a CSF leak to begin with??? I'm only 3 wks post op and I too worry about this. Especially if it can occur at any time down the road. The only symptom that I have now is a funny taste on the left side of my mouth--the same side the AN was removed. Reading other posts, I guess this is normal after surgery but can this be a sign of a CSF leak or just from the nerves being messed with??

[Boppie]

I've I had a salty?metallic taste since a month after my surgery.  My tongue was numb from day one. 

When I contacted my surgeon, he said "altered taste is part of facial nerve weakness" (that occured at surgery through manipulation of the nerve surface).  That nerve is ribbon like in structure and delicacy.  The weakness should resolve in time as long as the nerve was not cut and as long as monitoring showed facial nerve functioning at surgery.  All of my facial nerve weakness is resolved now except the altered tastes.  My taste and tongue problems are slowly resolving.

I would not relate tongue tastes oddities with a CSF leak especially if this was my only symptom.  CSF leaks have symptoms that are cummulative.  When present a CSF leak becomes apparent by nasal drops or most commonly frank dripping of clear thin fluid from the nose.  I have read that some CSF leaks are noticed via the incision site and near the ear. 

[Katja]

Hi There!
CSF leak you actually don't understand to give attention, at least I did not. 1st from my ear I was touching with finger into my ear tunnel and it was just tiny little wet. A bit later when lying on right side I felt that something was dropping, very small drops. After I put cotton in my ear & I really noticed that it was getting wet during night. That was it. 2nd time from my nose: I had runny nose after flu and it did not go away and it was from right side. Sometimes as I was pending down just like that fluid dropped out, without notice. Test that was it. Only thing is if you have CSF leak it means that you have small hole somewhere, fluid from your brain is getting out so also bacteria from outside can get in. Like me on 1st time I got Meningitis for my good it was not strong but I was in hospital for 2 weeks. But I can tell you surgery is much more easier as they don't go into the head, it done somewhere in the middle....

[Static]

I had that same test done to discover the CSF leak was present (they called it a plegit <sp?> study).  It was not a fun test.  I felt like they were shoving tampons up my nose then I had to go home like that until the next day, with the strings hanging out!  Try sleeping with that going on!   Stupid spinal puncture/tap made me sick to my stomach.  Like I said in one other thread, the test was worse than the actual procedure to repair the leak!  I did have a slight problem after surgery with spinal headaches but caffeine drinks helped and they resolved themself.  I still get headaches but they are different.  Good luck with the test, let us know how it turns out.

[Robquinn9]

My wife had her AN removed on 3/13/06 (surgery succesful). 

On 3/18/06, she noticed: a) post nasal drip, b) slight headache, c) some nausea.  These are signs for sure, and the Dr. also mentioned that sometimes the fluid will taste sweet.  If it is not sweet it is likely mucus.

Anyway, we had to get re-admitted and she has a lumbar drain in place to drain the CSF and allow the incision to heal.

Anyone have any comments on the lumbar drain and/or other options to get the leak to stop that they may have gone through?  Please feel free to send message to robquinn9@hotmail.com