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Author Topic: 4 year csf leak  (Read 9554 times)

Mark241

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4 year csf leak
« on: November 28, 2010, 01:47:44 am »
Hello everyone. I'm new to this great site, but not to AN. Short version, right 3.5 cm AN removed retrosigmod Nov 06 at Barrows. Had a 3.2 cm menningioma removed from my C1, C2 in Jan 06 with no problems. The An however, has been a nightmare. Began leaking 2 weeks post-op from the incision site. I was stitched backup which lasted for a couple months. The leak began again intermittently for the next 2-3 months. Then a surgical screw came out of the site. I had surgery at U of New Mexico hospital, where I live near. The neurosurgeon there said it was a bone infection and not csf. So i was on a pic line for 8 weeks. I began leaking again about 6 months after that. I went through another surgery, where they resealed my mastoid bone, still be living it was an infection, even though my blood work was fine, and i wasn't placed on antibiotics afterward. 6 months after that I leaked again. I got back in touch with my ENT at Barrows, who ordered a technetium bone scan, the results of that showed no infection. So I just came back from Barrows last week. My new neurosurgeon, said it was a csf leak, and wants me back there in a few weeks to place an LP shunt. Hind sites 20 20 , anyone out there had an LP shunt? Please no horror stories, I've lived that long enough. Thanks   
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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

CHD63

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Re: 4 year csf leak
« Reply #1 on: November 28, 2010, 08:34:47 am »
Mark .....

Welcome to this forum and WOW, what a nightmare you have been living.  For the newbies, what you are going through is very unusual and extremely rare.

I did not have a CSF leak, nor an LP shunt so I cannot comment on that.  Perhaps someone can shed some light on this for you with posts coming along.  I know Kathy (currently on the forum) has been through a similar nightmare of the incision not healing, PICC line, etc. so hopefully she will see this and comment.

Just wanted to say you have my thoughts and prayers that this shunt will be the answer to complete healing soon.

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

moe

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Re: 4 year csf leak
« Reply #2 on: November 28, 2010, 11:55:57 am »
Hi Mark,
Sorry I can't chime in either about the CSF leaks, you poor guy :'( trust me you will get lots of sympathy here, because we know it is NO fun dealing with life's new punches.
The LP shunt  will help if it is indeed recurring CSF leaks. An easy procedure/surgery I believe, but others will chime in.
Hang in there, bud.
Maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

jerseygirl

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Re: 4 year csf leak
« Reply #3 on: November 28, 2010, 06:56:50 pm »
Hi Mark,

I have an LP shunt implanted after my first surgery in 1988. It was a very easy procedure. The shunt has been an absolute miracle allowing me to finally heal months after surgery took place. It is still there, lasted me over 20 years and went through two pregnancies. The scars were closed using plastic surgery techniques and are totally invisible by now.

I was told by the implanting  surgeon that shunts actually have an expiration date. He has never seen one working after 10 years. So, mine is most likely not working anymore.

LP is the easiest shunt to have, followed by VP (ventricular-peritoneal) one.

So, don't worry, go for your LP shunt and finally forget about your AN!

                  Eve
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Mark241

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Re: 4 year csf leak
« Reply #4 on: November 29, 2010, 10:53:16 am »
Wow! Thanks so much for the replies! Especially the success of your shunt, that really gives me hope!
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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

Mark241

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Re: 4 year csf leak
« Reply #5 on: December 08, 2010, 01:12:48 pm »
Set for the LP shunt on Jan 4th at Barrows, kinda lookin forward to it, thanks' to all of your responses. I'll let ya know how it goes. Thanks' again.
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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

Lizard

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Re: 4 year csf leak
« Reply #6 on: December 20, 2010, 08:48:33 pm »
Good luck on the fourth, finally an end to your leak!
Liz
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Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Mark241

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Re: 4 year csf leak
« Reply #7 on: January 06, 2011, 04:44:17 pm »
Well had the LP shunt placed! The surgery took about 45 minutes, and only an over night stay. The only annoying symptom is headaches while standing or walking. These are called low CSF headaches, I would have them when I was having serious csf drainage. My Doctor said they should clear up in a week or two. Other than that, just the slight pain at the incision sites. Hoping this all works out. Thanks for the encouragement, Mark.   
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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

Jim Scott

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Re: 4 year csf leak
« Reply #8 on: January 06, 2011, 04:48:31 pm »
Mark ~

Alright!  Congratulations on getting the LP shunt and putting an end to the CSF leaks.  I trust your doctor will be proven correct regarding the headaches disappearing after a few weeks.  That makes sense.  Please post any updates, as they may occur.  Thanks.

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.

trhoads

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Re: 4 year csf leak
« Reply #9 on: January 07, 2011, 07:13:46 am »
Did you have the shunt place at Barrows or at UNM? I live in Albuquerque and am also dealing with my AN, but I am doing all of my follow-up now with doctors through Presbyterian. If you are interested in talking with me, let me know. I had a very bad experience with my doctors and my surgery at Barrows and I would never go back there (not the hospital, but my surgeon), but everyone's experience is different.

I hope that you are feeling better now,

Tonya
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Keri

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Re: 4 year csf leak
« Reply #10 on: January 07, 2011, 09:25:51 am »
That's great, Mark. I just saw this thread for the first time and understood a little more of your history now. Are you done with treatments for now? I hope the headaches go away soon, and I'm glad that you are encouraged.

keri
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1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

bell

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Re: 4 year csf leak
« Reply #11 on: January 09, 2011, 08:33:54 pm »
Good luck with your recovery. Hopefully your headaches will go away.
Bell
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Mark241

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Re: 4 year csf leak
« Reply #12 on: January 10, 2011, 09:26:17 am »
Headaches are just about gone, maybe a slight one early in the day. And the incisions seem to be healing nicely, most of all no leak!
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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

msmaggie

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Re: 4 year csf leak
« Reply #13 on: January 10, 2011, 09:49:29 am »
Whew!!  Heave a very big sigh of relief!  Hope everything continues to go your way :)  You certainly deserve it, after all this time.

Priscilla
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Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

kenneth_k

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Re: 4 year csf leak
« Reply #14 on: January 10, 2011, 01:47:20 pm »
Very good news indeed. Thanks for sharing.

Kenneth
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