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Author Topic: Dealing with CSF leak  (Read 10517 times)

CHD63

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Re: Dealing with CSF leak
« Reply #15 on: March 15, 2011, 04:03:53 pm »
Tim .....

You have been in my prayers.  Sure hope this is the end of your trials!  Sounds encouraging that the docs feel good about it.

Continuing thoughts and prayers.

Clarice
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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

MNTim

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Re: Dealing with CSF leak
« Reply #16 on: March 16, 2011, 12:31:02 pm »
Thank you Clarice,

I am recovering at Mayo and am sitting in the visitor lounge as we speak.  I have a lumbar drain so I am being monitored closely. 

Anyone that had a nasal leak experience "phantom leaks"?  I sometimes feel like fluid is running out of my nose but when I touch the area it is completely dry.

Tim
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8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

kenneth_k

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Re: Dealing with CSF leak
« Reply #17 on: March 16, 2011, 12:49:54 pm »
Hi Tim.

Ahhhh - the good old lumbar drain. At least you are allowed to move around ;)

I know the feeling and also feel it sometimes at my incision site. Is it not weird???

Take care.

Kenneth
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MNTim

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Re: Dealing with CSF leak
« Reply #18 on: March 16, 2011, 06:52:45 pm »
Kenneth,
Thanks for reassuring me that I am not totally crazy.

Tim
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8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

Suu

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Re: Dealing with CSF leak
« Reply #19 on: March 16, 2011, 07:06:33 pm »
Hi Tim
I still get that feeling every now and then even though the tube is totally filled with fat and stitched. It used to be like a 'wet' feeling with me too. You'll know it if it starts because it literally runs like a faucet.

I have all crossed for you and hope like crazy that this has worked for you.

Cheers,
Suu
« Last Edit: March 21, 2011, 08:37:01 pm by suujoy »
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4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

MNTim

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Re: Dealing with CSF leak
« Reply #20 on: March 18, 2011, 09:39:10 am »
Surgery ("repacked" eustasian tube) was Monday and have been "dry" to today (Friday).  The lumbar drain was removed this morning. So far no leaks.  I am hesitant to lower my head for fear of the dreaded "leak" but also realize if it happens it is better to deal with here.

The plan is to go home this afternoon. 

Great care at Mayo!  Very dedicated nurses.

Tim
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8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

Mark241

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Re: Dealing with CSF leak
« Reply #21 on: March 18, 2011, 01:08:33 pm »
Hope everything works out great! Your not crazy about the leak feeling, I still check my pillow case and towell each morning, and after every shower.
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4cm C1  16hrs                 Barrows, Jan 06      NF2
3.5 cm  Right AN retro       Barrows, Oct 06   
Cranial Plate removal           UNM Nov 07
LP                                   Barrows  Jan,2011
Wound revision                 Barrows Feb, 2011
5mm left middle Fossa,  (2) 2mm spine w&w

Suu

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Re: Dealing with CSF leak
« Reply #22 on: March 19, 2011, 12:46:51 am »
Hi Tim
Thank goodness you're calm and level-headed.
I was told not to sneeze or bend over for 6 weeks after my last surgery.  If you have to sneeze you need to bring it through your throat. As crazy as that sounds it's pretty doable when you know what the alternative could mean.

I have all crossed for you mate.  Keep on keeping on and we hope for some more good news soon.

Suu xxoo
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4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

kmancini

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Re: Dealing with CSF leak
« Reply #23 on: March 21, 2011, 01:28:43 pm »
It has been 1 1/2 yrs since my last CSF leak repair and I stiill get nervous doing anything.  The doctor said to gone on with life and I can do anything.  He said it was finally fixed.  But it is still in the back of my mind all the time.  Good luck to you
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An surgery 4-8-08
lumbar drain 4-22-08
csf leak repair 5-30-08 7-11-08 10-6 -08and 10-24-08
BAHA on 10-24-08
university hosp in Cleveland
Dr Megarian and Dr Selman
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