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Author Topic: CSF leak surgery  (Read 18382 times)

kenneth_k

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CSF leak surgery
« on: November 23, 2010, 01:25:24 pm »
Hello everyone.

Just talked to my surgeon today. We have decided to reoperate to try to fix the CSF leak once and for all.
I don't have the exact date yet but it should be soon.

It's a relief to go from "whats happening" mode to an actual plan. And folks here on this forum who has tried surgery for a CSF leak says its a walk in the park compared to the original surgery.

I have asked him to evaluate the MRI and my benign Cavum Septum Pellucidum Cyst to make sure it isn't the cause of the leak due to intermittent increased intracranial pressure. He promised to do so and I feel confident and trust him.

Best regards, Kenneth
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kiwi

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Re: CSF leak surgery
« Reply #1 on: November 23, 2010, 05:11:16 pm »
Hi Kenneth

From one leaker to another, I hope your surgery is successful and fixes it once and for all.
There has been a lot of talk on this site about leaks lately and I have noticed that compared to others who have surgery mine was pretty extreme.  I had a sub petrosectomy and blind sac closure, which has done the job very well, however  I no longer have an ear canal, and most of my ear was cored out and stuffed with fat and bone wax. My surgery was only 4 hours and it was not so bad compared to the AN surgery. I look forward to hearing about your operation and wish you well.

jacqui
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3.6cm AN Left side diagnosed Dec 09.
Translab surgery 16th March 2010
Left SSD, Facial Paralysis
CSF Leak surgery 11th May 2010

Funnydream

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Re: CSF leak surgery
« Reply #2 on: November 23, 2010, 05:54:51 pm »
Kenneth

I notice your sig says you had taste issues. Do you still have taste issues?

I'm 7 weeks post-op and still can't taste anything sweet.

And I also have a leak as well. Will see my Doc on Dec 2nd.
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Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

leapyrtwins

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Re: CSF leak surgery
« Reply #3 on: November 23, 2010, 07:12:38 pm »
Kenneth -

sorry to hear about the leak.

Have never had one myself, but as you say those who've been "patched up" report that it's not too bad.

I hope things go smoothly for you.

Best,

Jan
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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

mk

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Re: CSF leak surgery
« Reply #4 on: November 23, 2010, 08:44:11 pm »
Hi Kenneth,

Sorry about the problems, but at least you have a sound plan, so that you can deal with this problem once and for all. I wish you the best of luck.

Marianna
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GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

kenneth_k

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Re: CSF leak surgery
« Reply #5 on: November 24, 2010, 06:09:34 am »
Funnydream, my taste issue has been a lot worse. It took about 3 months to go from bad to bearable, and now it is only once in a while. It could actually be the CSF I experience now. Occasionally, a salty taste without eating or drinking anything.

Kenneth
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kenneth_k

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Re: CSF leak surgery
« Reply #6 on: November 26, 2010, 06:46:51 am »
Surgery date set.
7 december this year. I will be home for Christmas ;)

Kenneth
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cin605

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Re: CSF leak surgery
« Reply #7 on: November 26, 2010, 09:41:19 am »
Best of luck fixing your leak...Hope you have a speedy recoup.You are a very brave man.
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

GramaSuby

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Re: CSF leak surgery
« Reply #8 on: November 27, 2010, 10:05:02 pm »
My prayers are w/ you!
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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.

kenneth_k

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Re: CSF leak surgery
« Reply #9 on: December 10, 2010, 10:22:23 am »
I'm back ;D

Surgery was succesfull. The doctor found the site of the leakage and filled it with a muscle/fat graft from the stomach.
So now I'm even more a fathead that I was before.

This time I pray it will stay dry ;)

The next couple of weeks I will stay relaxed and avoid straining at all cost.

Best regards, Kenneth
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CHD63

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Re: CSF leak surgery
« Reply #10 on: December 10, 2010, 11:27:27 am »
Kenneth .....

So glad this surgery was successful ..... and as far as I know, you were never a fathead before, so ......   ;D ::) ;D

Also praying this fixes it once and for all ..... enough already!

Rest, rest, rest over the busy holiday season.

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

Jim Scott

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Re: CSF leak surgery
« Reply #11 on: December 10, 2010, 02:42:09 pm »
Kenneth ~

I'm pleased to learn that the source of your CSF leak has been located and sealed via the fat graft.  Like you, I hope this is a permanent solution.  Congratulations!

Jim
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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.

staypoz

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Re: CSF leak surgery
« Reply #12 on: December 10, 2010, 02:48:34 pm »
Kenneth, let's hope this does it for you!!!

All the best.

staypoz
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Mark241

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Re: CSF leak surgery
« Reply #13 on: December 11, 2010, 11:14:17 am »
Hope the leak stop's brother! Man I know how that goes, getting a lumbar shunt in Jan to try and stop mine (4yrs) if that doesn't do the trick I'll be having the same surgery as you, which I wouldn't mine to stop this . Please keep us posted. 
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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

Funnydream

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Re: CSF leak surgery
« Reply #14 on: December 11, 2010, 04:26:49 pm »
Great news Kenneth,

When I told my doc about my leak. He said "We should wait and make sure its not 'Pseudorhinorrhea'" Since my leak is so small its hard to even get a test tube sample. He said that long word means my nasal can get screw up from surgery. So I'm suppost to go back in 4 months.

I asked him about the taste issues. He said that it could be from the tube down the throat pressing on taste nerves. And lets wait and see on that too.

Kenneth, did you get the taste issue again?
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Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?
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