CSF leak surgery

[painter]

Jacqui,
Sorry to hear about your CFS leak.  I can only imagine how scary it is just waiting with it. I had to have a second surgery 10 days out from the original one.  I had a lumbar drain put in while in the hospital and was immobile for about 5 days. I was released and thought everything was fine, but 5 days later developed a massive blood clot.  This has been a big setback, and I feel could have been avoided.  I had no clue at the time how much of an issue it can be.  So please be careful and bring it to your nurse's attention if you are immobile for any length of time. 
Best of luck to you, my thoughts and prayers will be with you.
Tom

[dsharron]

Hi Jacqui,
Here’s the short of my story:
It's been 10 months since my AN surgery. I have had  5 surgeries  to try and stop the leak.    Now they are looking at doing a Craniotomy...to try stopping the leak from inside of the skull.
Is anyone familiar with this procedure?
Blessings
Derick

[Cheryl R]

Derek,    A craniotomy would be what we had done with regular AN surgery.   Surgical work inside the skull but not into the gray matter of the brain.     Was your previous leak surgeries just done the outside of the incision area.     My leak surgery at 2 weeks was going back by opening my incision and into the previous surgical area and putting more fat and other materials they used to plug it all.      They also did some work on the  bone area that has lots

[Cheryl R]

Sorry that this post got hit before I finished it.   The bony area with the air pockets was also redid.    My reason for the leak even was that the type of product used to help hold things in place was a new cheaper product that did not do what it should.    3 people had leaks with it.             So is similar to a major AN surgery but not as major.     Some recovery but not as bad.   But yes the poor skull is opened up.              I am surprised this was not done before if what was done for you previously is like I think.
   So not fun to have to go thru but should take care of the problem!                          I wish you well!
                                                      Cheryl R

[kiwi]

Derrick you poor thing, I'm sorry you have had so many surgeries for your leak.  I really hope they manage to fix my leak the first time.  I am really getting nervous about the amount of fluid coming out of my nose now, not just a drip anymore, pretty much a trickle. One week to go, not looking forward to it but I cant live with this free flow out my nasal cavity.

I thought a craniotomy is what we all go through if we have AN surgery?  When are they performing this procedure on you again Derek?

Jacqui

[dsharron]

Thanks Cheryl & Jacqui,
I just posted my thread & you can read my journey so far. Topic: "CSF Leak for 7 months - 5 surgeries failed, still leaking…" 
Jacqui, I'll be praying your surgery goes well.
Blessings,
Derick

[pjb]

My thoughts are prayers will be with you.

Best Wishes,

Pat

[SamaraHasbrouck]

Hello everyone I am a new member and this is my first post. I had my AN surgery on July 23, 2010. I had a successful removal of the entire 1.4 cm tumor and no damage to my facial nerve. That was my major concern. However, the same day I was discharged from the hospital, I noticed a clear fluid leaking from my right nostril. Being a nurse, I recognized right away what this was. I hoped it would stop by my 2 week follow up with my surgeon, but it did not. This all occurred this past Monday. I am scheduled for a second surgery to fix the leak this coming Tuesday, August 17th. I was so upset and discouraged. I did allot of internet research regarding csf leaks, and I found the most accurate and helpful information right here in this forum. I have read everyones stories about their experience, and it has helped to set me more at ease. There is so much wonderful information and inspiration in the stories you all share here. I wanted to say "thanks" to all of you, and I will continue to be an active part of this forum from this point forward.

[Lizard]

I also want to welcome you to the forum, and please do not hesitate to come to us for anything, we are here to show our compassion toward and share our experiences with others who are going through their AN journey.  CSF surgery is nothing compared to the AN removal.  Do you know how the surgeon will go in to repair?  I have a completely seperate incision directly behind my ear....just curious as it seems like there are multiple approaches to this sugery.
I second Donnalyn's questions...
Take care and hang in there, you will be feeling better in no time 
Liz