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Author Topic: 3 yrs out and a new CSF leak  (Read 5142 times)

yosemitesam

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3 yrs out and a new CSF leak
« on: November 19, 2010, 06:25:58 pm »
I had my first surgery in 2007 at Emory hospital in Atlanta. Had multiple CSF leaks and a total of 3 surgeries and meningitis.
Last month I got a new CSF leak and had to have surgery again.
I never expected after 3 years to have a new leak and was wondering if anyone else has had this happen.
Gosh I hope not but wanted everyone to know it is possible.
Hope all are well and recovering fast.  ;D
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3 surgery girl
multiple CSF leaks
Emory Hospital

lori67

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Re: 3 yrs out and a new CSF leak
« Reply #1 on: November 19, 2010, 07:01:06 pm »
Hi Sam.

I'm so sorry to hear you've had all these leaks to deal with! 

I, fortunately, did not have this problem, but my surgeon told me that the risk of a CSF leak does not go down the further out from surgery you are.  I guess once they cut through the dura, there's always a risk of a leak and or/meningitis.  I know others have said they were told the risk does decrease over time, but that's not what I was told.

I hope this is the last time you have to deal with this - I would think once would be more than enough!   ;)

Hope you are doing well after the last surgery.

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

6pick

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Re: 3 yrs out and a new CSF leak
« Reply #2 on: November 19, 2010, 10:12:01 pm »
Bummer, Sam, hopefully they used enough glue this time.   ::)
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5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

GramaSuby

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Re: 3 yrs out and a new CSF leak
« Reply #3 on: November 20, 2010, 11:41:13 pm »
Sam, 

What Lori said about the CFS leaks not decreasing over time is scary especially given your situation.
I know that we shared the same Dr's @ Emory and both of us got meningitis. I hope a leak is not in the cards for me and certainly NOT for you!  I pray you are done w/ it all :)  Keep on healing girl!
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Diagnosed Nov 08  w/ 14x13x14mm left AN. Translab on 9/30/10 w/ Dr's Mattox & Olson at Emory University Hosp. in Atlanta.  Post surgery complications were meningitis & pneumonia. Hospitalized for 12 days, zero memory for the first 5.

cin605

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Re: 3 yrs out and a new CSF leak
« Reply #4 on: November 21, 2010, 11:53:51 am »
How do you know when you have a leak?What are the syptoms?
Sorry to hear of this...How do they stop it?
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

wcrimi

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Re: 3 yrs out and a new CSF leak
« Reply #5 on: November 21, 2010, 04:50:02 pm »
My surgeon told me the probability of a leak decreases if you don't get one fairly quickly after surgery.   
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1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

kenneth_k

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Re: 3 yrs out and a new CSF leak
« Reply #6 on: November 25, 2010, 06:16:54 am »
Hi there.

I had a leak 1½ years after surgery and now I have one again.
My symptoms are intermittent in nature but include fluid running down the throat and some times out of the nose. Especially after straining and leaning forward. I sure hope you can get your leak fixed once and for all. Good luck.

Kenneth
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jaylogs

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Re: 3 yrs out and a new CSF leak
« Reply #7 on: November 25, 2010, 06:28:46 am »
Wow, that's interesting Lori...I had always thought that was one of those things that goes down over time...I guess not!  I know sometimes when I lean forward to do something I have a lot more pressure feeling in my head than I used to, but I don't know if prolonged exposure like that would cause a CSF leak??? Anyways, I hope you do get better Sam...hehe...I liked that remark about hoped they used more glue! :)
Jay
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8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

lori67

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Re: 3 yrs out and a new CSF leak
« Reply #8 on: November 25, 2010, 01:50:23 pm »
Well, we all know how much doctors differ in their opinions and approaches to things, so who knows what the truth is.

But, like a lot of other things in life, the risk is there, but it doesn't really change how I go about things.  Can't play the game of life with sweaty palms!   :D

And I liked the glue comment too!  Hopefully, they used the super duper stuff on me!

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

yosemitesam

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Re: 3 yrs out and a new CSF leak
« Reply #9 on: November 26, 2010, 09:57:52 pm »
Quote from: kenneth_k on November 25, 2010, 06:16:54 am
Hi there.

I had a leak 1½ years after surgery and now I have one again.
My symptoms are intermittent in nature but include fluid running down the throat and some times out of the nose. Especially after straining and leaning forward. I sure hope you can get your leak fixed once and for all. Good luck.

Kenneth

Hi Kenneth,
My symptoms were the same as yours and I am sorry you have another leak. I now have swelling around my incision so I guess its back to see the doc again.
I wonder if it is the fluid ???? take care and keep us posted
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3 surgery girl
multiple CSF leaks
Emory Hospital
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