CSP leakage after endoscopic removal of AN

[Cindy1016]

Hi,
I'm new on the boards.  I have gotten so much info and support just by reading all of the posts on the many different topics.
I had a 1.5cm AN removed from my left ear on November 7, 2007.  The procedure was endoscopic and done by Dr. Shahinian at the Skull Base Institute in California.  I am doing really well.  Just a little off balance when I walk.  Still feel some pressure in my head when I turn my head fast.  Have some numbness on the left side of my face and around my nose; in my mouth near my teeth on that side; slight heaviness in my eyelid, but no problems with closing it; and slight tingling in my tongue like wearing off of novocaine and salty taste.  Considering what I have read, I am very very fortunate!!!!!!!!!
I do have a question regarding cerebrospinal fluid leakage.  I know there is a minimal chance of leakage after having the minimally invasive procedure. I also know that a symptom is clear drainage from your nose.  I have this on the left side with some burning at times and no symptoms of a cold.  How do you figure out if this could be a symptom of leakage?  Anyone have leakage after having the minimally invasive procedure?  Any other feedback from people who had the endoscopic  procedure, on their healing process, is appreciated.                   
                                                                                              Thanks, Cindy

[jerseygirl]

Cindy,

Congratulations on becoming a postie! You seem to be doing wondefully post-op. I also had an endoscopic surgery at SBI- revision of AN. My tumor was bigger and all at the brainstem, so the recovery takes longer but it is happening!

To answer your question about CSF leak: I did not have it from the nose but I know somebody who did. CSF leaks are "serious business" , the way Dr. SH put it, because you can get meningitis from it. All neurosurgeons try to repair it as fast as they can. This is really unfortunate if you get it.  If you have trigeminal symptoms like numbness and others (I did) the sensation of something being run down the nostril might come from that. I always put my hand under my nostril and there was nothing there - no leak.  If you definitely have something running down your nostril, things get a little more complicated. First of all, does the fluid run any faster if you bend down? If yes, then there is a possibility of the leak. Secondly, you can go to a local emergency room and have a test done (I am not sure what it is called but maybe somebody will chime in) to show if the fluid from your nostril is indeed CSF. It should be pretty simple and not invasive. That would put your mind at rest.  Maybe, Dr. SH can tell if it is a leak or not. I would suggest e-mailing his staff.

How is your hearing in affected ear?

            Eve

[Cheryl R]

I had regular surgery and not the type you had but I did have a CSF leak.        I was told to sit leaning way over head down and if the fluid dripped like a faucet then it was a leak.        Drip and then a few seconds later another drip. This was 2 weeks after the surgery and I did have to have surgery to repair the leak.   Just with the head up straight and some runniness can just be nasal drainage.   I have had 2 AN surgeries( besides the CSF leak repair) and with the first my nose ran like a sieve and I was scared to death.     However when did the bend over test it would not drip like I described above.                     
If in doubt then contact your dr.
                                                              Cheryl R

[lori67]

Cheryl,

I've heard of the bending over thing too to see if it could be a leak.   Sometimes after surgery, your nose will drip when you eat, or your eye will water - those are just reflexes that are probably a little confused after the surgery.

My doctor told me that a leak was not as big a deal as it may seem (although everyone else has heard differently).  He told me NOT to go to the ER and to call him because if you go into the ER with spinal fluid coming out of your nose, they will panic and that's not necessary.  While it is serious and does need to be taken care of, it's not actually a life-threatening emergency.  He explained it's actually your body's way of releasing the extra pressure - like a built in pop-off valve.

You should probably call your doctor to make sure everything is okay.  No point in taking a chance.   Not all doctors are as laid back as mine.   And, Eve, yes there is a way for the doctor to tell if it's CSF or just gunk coming out of your nose.  There are things in CSF that aren't in "gunk".

Sounds like your recovery is going well overall!  Hope that keeps up!
Lori

[jerseygirl]

Lori,

Dr. Shahinian is NOT laid back. Neither are the neurosurgeons in NY from my experience. Dr. Sh told me when I left California that ,if I suspect a leak, call him immediately even in the middle of the night! Thank God the leak never happened! Do you know what the test for the CSF leak is called and what it involves?

                          Eve

[Cheryl R]

When I had my leak they told me I could wait until the next day to come back to Iowa City as long as i wasn't running  a temp which I wasn't..         I did go back then and was put on bed rest for a day to see if it would stop and it didn't so then back to surgery.                      I was told the only completely accurate test to check if it was CSF was a beta transferrin test which even my large university had to send somewhere else to be done.                  I think sometimes it may be checked for glucose but it is not a accurate test. 
                                                Cheryl R

[jerseygirl]

Cheryl,

How is beta transferrin test done? is it a special piece of paper under your nose?

            Eve

[lori67]

Eve,  I'm not sure what the test is called or how it's done.  I just remember they used to do it in the hospital I worked in for brain trauma patients and things like that.  I'll have to ask one of my friends who is a nurse in the ICU there. Now you've got me curious too.

I know in nursing school and EMT school they used to tell us that you could tell because spinal fluid is salty - but I've never met anyone who was willing to test it that way!  Yuk.

Lori

[jerseygirl]

Lori,

I had the salty taste in the mouth both first and second times for a few months. The first neurosurgeon explained to me that this is how the facial nerve regenerates in me. I definitely did not have a leak from my nose that time and already had an LP shunt implanted because the leak was self-contained under my incision. If I did not know this, I would have thought that the salty taste was the leak the second time around! I don't think you can rely on the taste alone. The salty taste is all gone thankfully.

             Eve

[Cindy1016]

Cindy,

Congratulations on becoming a postie! You seem to be doing wondefully post-op. I also had an endoscopic surgery at SBI- revision of AN. My tumor was bigger and all at the brainstem, so the recovery takes longer but it is happening!

To answer your question about CSF leak: I did not have it from the nose but I know somebody who did. CSF leaks are "serious business" , the way Dr. SH put it, because you can get meningitis from it. All neurosurgeons try to repair it as fast as they can. This is really unfortunate if you get it.  If you have trigeminal symptoms like numbness and others (I did) the sensation of something being run down the nostril might come from that. I always put my hand under my nostril and there was nothing there - no leak.  If you definitely have something running down your nostril, things get a little more complicated. First of all, does the fluid run any faster if you bend down? If yes, then there is a possibility of the leak. Secondly, you can go to a local emergency room and have a test done (I am not sure what it is called but maybe somebody will chime in) to show if the fluid from your nostril is indeed CSF. It should be pretty simple and not invasive. That would put your mind at rest.  Maybe, Dr. SH can tell if it is a leak or not. I would suggest e-mailing his staff.

How is your hearing in affected ear?

            Eve

[Cheryl R]

   I had to let the fluid drip into a small cup.   They needed a fair amt.      3-5cc which iseemed like a lot when it is drip by drip.                             
                                                Cheryl R

[Static]

My surgery was done 4 years ago through a suboccipitical approach done at Jeff in Philly.  Because I was a few months out of surgery when I told my doc about the dripping, and yes it occurred when I would bend over, drip drip drip like a faucet, I was sent in for a test.  It was called a plegit (not sure of the spelling) study.  Basically it went like this..... First I had a scan done, then I had a lumbar punch with a dye injected into the spinal fluid, then I had these things put into my nose, almost like tampons shoved up into my nose, and I had to keep them there for 24 hours.  Then they sent me home and I went back the next day for another scan and to take the nose tampons, or plegits out.  As soon as they pulled those suckers out, I knew it was a leak (I kind of knew it deep down inside anyway) because they were glowing green from the dye.  I was then contacted by the neuros office and immediately admitted into the hospital.  After being admitted I was scheduled for surgery (otolaryngologist did the surgery) and the leak was plugged through the mastoid bone behind my right ear (leak was dripping through right nostril).  I had a lumbar drain in for a day or so and after it was removed I was told I would probably have spinal headaches.  The guy who removed the drain and stitched it told me that caffeine would help with those kinds of headaches and he was right.  I don't know what else to add, but if you have any other questions, just ask.
~Karen