ear and nose fluid leaking after brain surgery?

[Pixiangelj]

Hi-I just had a quick question, hopefully you can put me on some sort of path. I'm 20 now and last year I had a pilocytic astrocytoma removed from the left side (temporal bone area), September 2004; May of 2005 I started to have clear water like fluid draining out of my nose.(both sides) In october I fell down concrete steps and had blood coming out of my left ear, I went to the emergency room, they told me that I had scraped the inside of my ear with a Q-tip, and I had a tension headache...Ok I guess?so after that incident I started having fluid draining out of my ears, BOTH ears (which is odd I have been told)-just recently I started having pressure type headaches like my head is in a vice. So I went to the doctor (primary care) and now it's allergies. They have taken CT and MRI scans, my sinuses look clear and we've gone from allergies, to post nasal drip, to skull fracture, to ear infection, to CSF leak and they are thinking that it's allergies. My doctor told me that to diagnose this, it depends how much pain I want to go through. If there's nothing 'wrong' why would it be painful?? I am being extremely persistant (a little frustrated)My next thought is going to an ENT or allergist. So it has almost been a year now- and they are trying to convince me that this has ABSOLUTELY nothing to do with my surgery? I have no previous history of any type of allergies whatsoever. Am I being unreasonable,or should I keep looking for what is 'wrong'? I know this isn't a common thing, so I know that something isn't right-just to what degree...Thank you for your advice, anything helps

[CCF-Neuro-M.D.-PW]

A CSF leak is something to consider, in general it should be assumed unless proven otherwise.

MRI or CT unless they show a skull defect or fracture may not reveal a small leak. The actual fluid draining from the nose can be tested for glucose which can differeniate it from regular nasal fluid.

A radionucleotide scan of the brain can also give a clue to a CSF leak.

CSF leaks put one at risk of meningitis, particularly pneumococcal meningitis. If you have not had the pneumococcal vaccine, you should.
repair of a CSF leak if identified can be tricky, and may involve anything from a non-invasive intranasal repair to both intransaal and intracranial surgery.

Good luck

[fcar]

you alone know your body.  I have posted a few times.  Though I didnt have surgery I have 24hr headaches and the fluid drains inside my head and fills up my ears I could go on.  I have been told its stress allergies etc. to name a few things.  Mine started after a sinsu infection.  I know not only in my gut but becasue the way my head feels something is wrong.  I am getting no help from doctors.  Been happening for a few years with no help.  The only thing I keep doing is going to doctors hoping somewhere someone helps me.  So you need to listen to yourself.  Though we cant diagnose ourselves will still know we are right.  Though I have to say you sound like you have a CSF leak.  Which is what they thought I had, I understand from myself and researching it can be very hard to figure out.  If you read previous posting some other people complain of fluid also.   If your doctor is suggesting a cisternogram (had two though I think one was misread)  anyway.....go they are not as bad and it will be over and done with.  wishing you luck.

[Pixiangelj]

Thank you for your insight and reasurance, I hate to think I'm being neurotic...I wish you the best also, when my B/T symptoms started I had a 24 hour headache didn't sleep couldn't watch TV, go in the car- It's no way to live. Have you gone to the Mayo clinic? Take care and thanks again.

[who_is_this]

I have a friend who had some sort of cranial surgery, and noticed weeks later that her nose was always running.  She went thru the usual things (it's allergies, sinus, etc) and then one very smart FP doc simply took a swab of the nasal discharge that was running out and tested it for glucose (with the strips available for urine testing).  It was pos for glucose, which is NOT present in normal nasal secretions.  

This led to her getting all sorts of specialized diagnostic tests (not sure which) that showed it was a chronic CSF leak that developed after surgery.  She spent a long time being told it was all in her head, allergies, no WAY could it be a CSF leak etc.  bad news is that there is virtually nothing that can be done except major surgery that may or may not either fix the problem or make it much worse.  So she is doing nothing and is ok, just has a constantly dripping nose.

[who_is_this]

Incidentally, the neuro who had done the initial brain surgery told her that the glucose test didn't prove anything and it still didn't indicate a CSF leak which he said was NOT what was happening.

She had to get another neurosurgeon not affiliated with the first one to do all these specialized tests (sorry I can't remember what they were but there were a ton) that did show it was CSF.

[fcar]

hi

thanks for your well wishes.

I too have been told glucose test strips dont mean anything.  though all the research suggests there is no glucose in mucusou so i dont know why it cant be used a tool in diagnosing csf which I know I have.  By the way my strips have also tested postive.  Sad to know we all have to live this way because too many doctors have no idea what they are doing

[Pixiangelj]

You know I have spent countless hours researching what they probably should, and at this point I honestly feel like it is a CSF leak, I have virtually the normal symptoms, but the tests are just not cooperating, and my nose doesn't drip enough to them- Can you live with a CSF leak? I heard it's dangerous cause of meningitis, but if it comes down to them drilling through my skull again, I might take my chances...thanks again for responding it helps actually interacting with people that can relate, better than an encyclopedia : )
fcar- http://www.mayoclinic.org/  I'd really want to try to somewhat help...it takes a lot of work, especially when you don't feel well
who_is_this- the first thing they did was that strip and it tested negative?? Is that a 100% correct, or do you need a beta protein test?

[who_is_this]

No, they did the glucose test and it was POS.  Her original neurosurgeon told her that was meaningless, so she went to a totally different neuro who said while the glucose test isn't 100%, it certainly meant that she needed furthur investigation.  I know they did a bunch of tests (some very invasive) before showing that it WAS in fact CSF but that there really wasn't any meaningful way to do anything about it.  

The neuro who did her surgery insists to this day that there is NO WAY this could be CSF.  Meanwhile she still has a constantly running nose, every day and it has been over a year.  Headaches, dizziness, all sorts of things.

[fcar]

the first thing was the test strip which one doctor suggested.  Every doctor thereafter said it meant nothing.  As stated I know something is wrong.  My tests all turned up negative (though I beleive misread by my gut instinct)  I had other MRIS and a cisternogram. The cisternogram is not pleasant but I would go thru another one if it helped.  Though it scares me because that inturn can cause other complications from what I read and the posting of someonelse after you about lumbar puntures.  I also have read that to test for a csf leak with mri/ct scan the slices have to been as thin as possible.  I asked some doctors this they told me I have no idea what I am talking about.  Slices are slices and will show somehting.  I still belive though that a technogist can take to thick of slices missing something small its just common sense.  I dont care that a doctor disagrees they dont know everthing.  I am trying to get a doctor who will order a test specifically having the slices taken as thin as possible maybe someone will listen one day.  Ohter than the MRi and cistenrogram I am not sure of other tests.  If you know of any please let me know maybe we both can be helped.  Good luck.........

[Pixiangelj]

I actually have a CT (thin slices scan), already had a thick slice scan, on Saturday- surgeon on Tuesday...they're already telling me that my symptoms are odd and so I have a feeling that this one will come back fine too- you know there is a great person in the Undiagnosed forum that knows a LOT about CSF leaks, I would try a post in there, she has been helping me out quite a bit...I will be informing you how everything goes : ) Thanks again...good luck, keep your determination, you're already this far, almost there

[fcar]

hi

thanks i will look.  I have been told my symptons are odd and impossible.  How would they know they never felt this way themself.  And we are the only ones who know how our body feels.  keep me posted too.

[Yak]

I've just read some of the comments about leaking nose fluid as I woke up last night to find a curiously thin liquid dripping onto my pillow. Although I have not had brain surgery I did undergo major surgery on my upper jaw 3 years ago where my jaw was removed and reset.  I wouldn't have bothered reasearching this if not for the fact that later today as I got out of my car this liquid began to flow freely down my face. The fluid drained in about a minute, but I noticed on my tissue that the fluid had a slightly orange tinge to it.  This leaves me less than inspired after reading these postings, and I can identify with anyone who's experienced this as to just how disconcerting it is.

[mimi*s]

My comment is in response to what 'Yak' said happened----orange fluid leaking from the nose.  I, too, had a watery orange fluid leak rather rapidly from my nose as I bent over to pick something up.  My doctor said it could possibly be bile, but I swear I did not feel anything come up through my throat.  Did you ever find out what it could be?  I have not had any head or facial surgeries---but I did have a bad neck injury 10 years ago that still gives me problems.  I also have started to have migraines and these mystery "episodes" that occur about every 6 weeks.  These episodes consist of a severe chemical rush throughout my body, diarrhea, stomach cramping, asthmatic breating, flushing of the face, eratic pulse, dry mouth, and a restless, agitated feeling.  These episodes last about 4 hours.  I've had a multitude of tests and for awhile they thought it was Carcinoid Syndrome.  They still have not given me a diagnosis.  If anybody has any information or similar symptoms, please share.

[CMaeve]

Hi, My comment relates to Yak's and Mimi's postings. At work today, I have suddenly experienced the same problem you both mentioned: watery orange liquid running out my nose. I have had a cold for the last week, with some blocked sinus symptoms, however this is not like the usual discharge you experience from a head-cold (usually thicker). Moreover, I can bring the symptom on myself, by lowering my head forward, towards the ground - when I do, the liquid begins to run again. There is no pain, no unusual taste or smell, and I have no history of head surgery or chronic nasal problems, so it's hard to give any more details - if anyone knows what the cause of this could be, I'd really like to know?? Thanks.

[CMaeve]

Hi, My comment relates to Yak's and Mimi's postings. At work today, I have suddenly experienced the same problem you both mentioned: watery orange liquid running out my nose. I have had a cold for the last week, with some blocked sinus symptoms, however this is not like the usual discharge you experience from a head-cold (usually thicker). Moreover, I can bring the symptom on myself, by lowering my head forward, towards the ground - when I do, the liquid begins to run again. There is no pain, no unusual taste or smell, and I have no history of head surgery or chronic nasal problems, so it's hard to give any more details - if anyone knows what the cause of this could be, I'd really like to know?? Thanks.