Author Topic: CSF LEAK???  (Read 3053 times)

CMC

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CSF LEAK???
« on: June 11, 2015, 08:36:12 pm »
I probably should contact my doctor but I feel like its a dumb question. So here it is...is it possible to have a CSF leak before having the AN removed?  I ask this because I am currently watch n wait and during this year my symptoms have gotten a bit worse. Still tolerable but my most recent problem is clear fluid running from my right nostril along with right sided headache and facial pain. Also when i turn quickly or bendover i get a boat rocking sensation and throbbing at the base of my skull. This weird dizzy feeling makes my heart jump and feel nauseous. If I didnt have a tumor on that side I might consider it sinus issue but I dont have allergies or a fever.

When I put this in writing it seems obvious that I should have another MRI. It has been almost a year since my last but I was put on 2year schedule because of stability. I hate running to the doctor for every little thing! Makes me feel like hypochodriac. I am curious if anyone else has had or heard of this? the clear fluid like water  coming from my nose is what leads me to wonder CSF.         

Thanks,   Tina
Watch'n'praying my tumor doesn't grow! 11mm/9mm/8mm

CHD63

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Re: CSF LEAK???
« Reply #1 on: June 12, 2015, 05:07:46 am »
Hi Tina .....

First of all, no question is dumb on this forum.  But, yes, you really answered your own question in a way.  You should definitely call your doctor and report this new symptom.  Since it has been almost a year since your last MRI, I would certainly lobby for another one if the headache, facial pain, and boat rocking sensation symptoms are worse than before.  ANs can be nasty little buggers to stay stable and then have a growth spurt.

As for the CSF leak possibility, it seems unlikely without having had surgery, but anything is possible.  *Note:  none of us posting on here are medical professionals.  This is a question for your doctor, as you stated.

Many thoughts and prayers and let us know what your doctor says.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ANGuy

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Re: CSF LEAK???
« Reply #2 on: June 12, 2015, 01:10:05 pm »
My uneducated guess is that your AN did not cause a Csf leak.  However, CSF leaks can occur for no real reason at all.  It is rare, but some non-AN people simply get a CSF leak without having surgery.  Also, my Dr made it very clear that "any change in symptoms" should be reported immediately to him.  I am WW with a tumor about the size of yours and he really stressed this point with me.  I have seen others on here post about getting the same advice.  I think with all you are describing, it certainly qualifies as a "change in symptoms" and should be reported to your Dr.  No, you would not be an "alarmist" for calling his office.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

CMC

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Re: CSF LEAK???
« Reply #3 on: June 16, 2015, 07:30:29 pm »
HI thank you for your replies! I feel more relaxed about my question of CFS leak. And yeah I should contact my doctor and will soon. I am only reluctant  because I have already paid for one MRI a year for 5 yrs. I was looking forward to a break. Medical  bills plus my too expensive insurance  premiums are ridiculous and terrible timing. Is what it is I guess. I will report once I finally have it done.  :)
Watch'n'praying my tumor doesn't grow! 11mm/9mm/8mm