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ear and nose fluid leaking after brain surgery?
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MedHelp Member's Question

ear and nose fluid leaking after brain surgery?

by Pixiangelj, Mar 01, 2006 12:00AM
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
Doctor's Answer

by CCF-Neuro-M.D.-PW, Mar 08, 2006 12:00AM
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
Member Comments (15)

by fcar, Mar 01, 2006 12:00AM
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.

by Pixiangelj, Mar 01, 2006 12:00AM
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.

by who_is_this, Mar 01, 2006 12:00AM
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.

by who_is_this, Mar 01, 2006 12:00AM
To: and
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.

by fcar, Mar 01, 2006 12:00AM
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

by Pixiangelj, Mar 01, 2006 12:00AM
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?

by who_is_this, Mar 01, 2006 12:00AM
To: pixiangelj
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.

by fcar