Author Topic: need advice  (Read 4440 times)

Sammict

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need advice
« on: July 16, 2008, 10:31:45 am »
Hi Everyone

  I had sinus surgery 3 years ago. Back then I used to get this leak from my nose everytime I bent over but I thought nothing of it I thought is was just my sinuses getting clear.
 
  The problem would go away everytime i would get an infection which was alot. My problem is back and I thinks it's because I just had surgery on my ear drum in preperation for AN surgery this fall. My sinuses have cleared up since that surgery and the leak is back.

 It is clear fluid and drips on a whim I can't control it. is it possible I have been leaking for 3 years with no other symptoms?

I have an appt next Thursday but i'm afraid to bring it up. Has anyone had anything similar could it possible be CSF leak?

Thanks Sam

Tamara

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Re: need advice
« Reply #1 on: July 16, 2008, 10:41:58 am »
I suppose it could be - but don't really know.  I would talk to your doctor about it - if it IS a leak, you don't want to risk infection - meningitis.  If fluid can get out, bacteria or viruses can get it.  Best to be careful.

Tammy
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

cmp

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Re: need advice
« Reply #2 on: July 16, 2008, 10:49:46 am »
I agree with Tammy, bring it up with your doctor. Maybe it's nothing, maybe not. Your doc will be glad to rule out a problem or, if need be, help you head one off at the pass!

5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

Syl

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Re: need advice
« Reply #3 on: July 16, 2008, 10:49:59 am »
Sam,

I suppose it could be - but don't really know.  I would talk to your doctor about it - if it IS a leak, you don't want to risk infection - meningitis.  If fluid can get out, bacteria or viruses can get it.  Best to be careful.

Tammy

I'm with Tammy. I heard about a patient who had a CSF leak for a year before the issue was addressed. The patient turned out ok in the end, but it was necessary to operate to patch up the leak. Please do mention it to your Dr. asap.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Joef

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Re: need advice
« Reply #4 on: July 16, 2008, 10:54:58 am »
it does sound like a csf leak !
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Cheryl R

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Re: need advice
« Reply #5 on: July 16, 2008, 11:07:16 am »
I did have a CSF leak 2 years ago.      Sit down and bend your head way over.     Hold a cup or tissue under the nose for several minutes.    It will leak like a faucet.      Drip and after so long drip again and again.     I called my hospital and since it was evening and 2 1/2 hr trip they said I could wait until the next day since I was not running a temp.                 They put me on bedrest for a day and since there was still a drip the next day after that then did surgery.                 
My nose also runs at times but it does not drip.    Sometimes a clear fluid and sometimes more thicker fluid.      The only really positive way to see if it was CSF was to be a beta transferrin lab test which was a several day test.
I am not sure with the type of surgery you had that it would be a CSF leak for sure.       I know it is a worrisome  thing.                 My nose ran alot of a clear fluid when it ws hot after the 2001 surgery but since it did not drip when I did the bend over test than my surgeon said it was not CSF.                                         
                                                  Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Jim Scott

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Re: need advice
« Reply #6 on: July 16, 2008, 12:20:15 pm »
Sam:

I'm very suspicious that this may be a CSF leak.  Call your doctor. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

wendysig

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Re: need advice
« Reply #7 on: July 16, 2008, 03:53:46 pm »
Sam,
Based on what everyone said this sounds like it could be serious.   Please be sure to mention this to your doc tomorrow  We'll be waiting to see what he says.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

leapyrtwins

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Re: need advice
« Reply #8 on: July 16, 2008, 05:00:32 pm »
Sam -

this sounds important.  Call your doctor ASAP.

It could be nothing, but then again it could be something - so it's better to check with a medical professional.

Please let us know how this all works out.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Sammict

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Re: need advice
« Reply #9 on: July 16, 2008, 05:21:30 pm »
thanks everyone
  Cheryl I took your advice and bent over and dripped in a cup it wouldn't stop dripping.

   I looked up my sinus surgery and one of the risks if CSF leaK. I just can't beleive it. The doctor that did my sinus surgery is the same doc that put tubes in my ear when I lost my hearing. He never once said i should be looking for any leaks. I have thought this was normal. if i hadn't been in this forum i never would have known.


  Thanks for everyone's advice I am going to call my doc. i will let everyone know how I make out.

Does anyone know haow they would test the fluid to see if it is CSF ?

Sam




Debbi

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Re: need advice
« Reply #10 on: July 16, 2008, 05:41:30 pm »
Sam--
Just saw your post and agree with everyone else in urging you to contact doctor asap.  I'm not sure what the test is for CSF leak - Cheryl may be able to shed light on this.

Sending you many good thoughts.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Cheryl R

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Re: need advice
« Reply #11 on: July 16, 2008, 06:19:49 pm »
The University of Iowa did the beta transferrin test and took several days even to get it back.
Darn, I was thinking due to location and where surgery was done that there was a chance it was not  CSF.     If you are not having headaches or fever then you are doing ok for now.
We will be waiting to see how it goes.               
                                                        Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

sabuck

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Re: need advice
« Reply #12 on: July 16, 2008, 06:29:09 pm »
Sam,
You have enough people urging you to get it checked out. All I can say is that my medical team, post op, kept having me bend forward with my head down to see if anything leaked out. I can't count how many times they had me do this. This is the sign of a CSF leak according to them.
Approx. AN 2.5 cm prior to surgery on 10/7/07)
(Cerebellopontine Angle Tumor)
The Ohio State University Medical Clinic (Drs. Brad Welling & John McGregor)
SSD post op - left side
BAHA surgery 4/25/08 Dr. Brad Welling 7/3/08 for Baha use!

Sammict

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Re: need advice
« Reply #13 on: July 24, 2008, 01:32:07 pm »
So the verdict is in it is a slow csf leak going back to 2005 when I had sinus surgery. It looks like this is going to delay my AN surgery
  that was going to take place in the fall.

I am being referred to a surgeon that specializes in CSF leak from the sinus area. They asked me to collect fluid and bring it with me on Monday morning. I am
  a little nervous i don't know what to expect.

Thanks for everyones input

Sam

Debbi

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Re: need advice
« Reply #14 on: July 24, 2008, 01:44:39 pm »
Sam-
So sorry to hear that it IS  a CSF leak - but it sounds like you caught it in time.  Keep us posted on what happens next - you know you've got lots of prayers and good thoughts coming your way.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com