CSF Leak :-/

Question

Back in ccf. Sprung me a few leaks. :-/

auntij2746 · Answer

How are you doing? I saw you posted a few hours ago and wondering if you have the drain in yet and how it's going. You are in my prayers. HUGS. June

Rahe28 · Answer

You are in my prayers and thoughts my dear. Hoping that the drain helps and that you will be well soon.

auntij2746 · Answer

You are in my thoughts & prayers.  My surgery was 9/24. I sprung,leak last week which was stitched in Dr's office. We all thought after a week it was sealed then on 8th day,  another leak. I was told to go to the hospital yesterday AM, prepared to have a lumbar drain and stay there 5 days. Then at the hospital the Dr decided to give the leak another shot to heal on its own and put a larger stitch in, and so now I am back home with the understanding that if there is another leak, and no matter how small I will have the ld and possibly a surgery re-do. SO I am right with you... I will keep praying that this drain totally allows your leak to heal without a doubt . hugs June

jiggle93 · Answer

OH NO!! Sorry CW, but I have the vision of your head looking like a lawn sprinkler from your statement of sprung more leaks and the pressure being too high...sorry, hope you have a sense of humor ATM! I am so glad that they kept you there and discovered all of the leaks! How long will they leave the drain in? Praying the pressure is under control and that the HA is responding to the meds!

zygy2 · Answer

So sorry you are dealing with this now!!!  Thanks for the information.  Hopefully you don't have to keep the drain too long.  I was leaking after the first three surgeries and eventually had  a lumbar shunt put in but even though it was high enough to create leaks, the pressure did not seem to want a shunt, the shunt was a nightmare!  I just had surgery 4 and the shunt out all at once and they let me keep the drain externalized for five days and then they finished pulling it.  I hope my head is not leaking... does not feel bad so hopefully that is a good sign... this time it was my side that would not stop leaking (where they removed the shunt)  They are agreeing that EDS could be the issue!!  Do you have EDS?  The antibiotics are such a pain but they keep you healthy!! :)  I just finished mine and it has been 2 1/2 weeks of them... looking  forward to my stomach feeling better!   Are they giving you torodol for headaches?  I think that was the name of what they gave me... worked pretty well to help but can only be used for five days so its use is pretty limited!    I hope they get the leak to stop and you can feel better!!  It is not fun to be stuck in the hospital!  Do they think you are going to have long term high pressure issues?  -zygy

selmaS · Answer

Thanks for the updates....

   sounds like they r taking good care of u <3

ChiariWolf · Answer

Nurse said the acronym stands for 'Sub-Arachnoid Drain' as the tube sets just under the arachnoid tissue. Yes, it is temporary.

The NS said my pressures are staying at a high enough level that it just keeps bursting the tissue around the incision sight. The hope is that by allowing it to drain through the installed drain it will keep things cleaner and take the pressure off the incision sight long enough for it heal. 

Right now antibiotics and something for the HA. Forget what it's called.

CW

zygy2 · Answer

Is SA drain a lumbar drain?  Is  it just temporary?  I had a lumbar drain after surgery #3 and it was icky but was supposed to help.  I hope the drain helps with the leaks!!!  Some of us really seem to have leak issues!!!! So frustrating! I hope they find answers and can fix you up soon!!!  Hope you are healthy and home soon!  -zygy

selmaS · Answer

OMgoodness....wow...

 Praying that helps...did they put u on meds to help with the pressure too?

  How is ur family doing with all that is going on?

   sending prayers <3 and ((hugs))

    sis

ChiariWolf · Answer

Sprung more leaks:-/ They determined that CSF pressure is too high. So instead of going home today they put in an sa drain.

selmaS · Answer

CW...sending <3 ((hugs)) and prayers and so glad there is no infection....yea....and the pain is under control....

 ~~~~ sending Healing MoJo too...lol....

Thanks for the update : )

irislita · Answer

Thoughts and prayers for u!!

ChiariWolf · Answer

Should know more tommrow. They stitched it all shut again last eve. Resident found three separate leaks. So the are still considering an 'sa drain'
Hopefully things don't go that way.

As of now no infection in the CSF! That's good news. However they found staff virus in one of my blood cultures. No fever so they are hoping to nip that in the budd before anything comes of it. Whew.... What a load!

For the most part though, very minimal pain. HAs at times, but thus far meds keep em under control just so I rember to ask before the HA gets bad.

Sorry, was hoping to be telling you all I'm on the way home by now. We'll just keep positive thoughts and prayers.

CW

selmaS · Answer

I know.....hopefully it is not going to be a huge issue and they can resolve it quickly.....sending prayers <3

linnielou232 · Answer

Thanks Selma.  I thought it was a little longer.   So sad to hear he is having this problem.

selmaS · Answer

CW's surgery was Oct 5th.....

linnielou232 · Answer

So sorry to hear your dealing with this.  How long has it been since you had surgery?  I had to deal with 2 csf leaks and they are no fun.  Sending prayers for positive thoughts and strong healing.  Damm leaks anyway. 
Linda :)