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View Full Version : Just a warning do'nt ever get a shunt for your leak!!!!and more


dagaz
10-07-2006, 01:16 PM
Hi I have had a Csf leak for 13 years I sneezed after a bi-frontal craniotomy and blew the whole surgery site open, I filled a cup full of CSF and it has been unrepairable since obviously. My NS put a shunt in to take the pressure off of the leak site, well
my ventrilcles became dependent on a shunt I became hydrocephalic! I was flown air ambulance because of a blocked shunt and my ventricle had blown up like a baloon, and I will always depend on a shunt to live :mad:

The shunt never slowed down my leak, obviously I don't leak a cup full anymore or I'd be dead, but I'll say the NS don't have to question it because it runs down my face if I don't catch it with something. I live with the pain, My Dr.'s are great about it after my last craniofacial craniotomy they said enough is enough there is nothing they can do for me so they make me as comfortable as possible.

Concerned Gal
10-09-2006, 08:25 PM
Just wanted to thank you for the warning. Sounds like you have certainly had a rough time. If you don't mind me asking, how do you function on a daily basis? You mentioned the doctors are going to make you "comfortable" rather than continue with surgeries etc. Just interested in what that entails.

I've had a csf leak for 10 months, being essentially bed-ridden for 4-5 of those months. I'm just starting to be able to function a bit more and wanted to see how others managed to live a normal life. I'm currently facing the "am i ready to try to work again?".

eirama
11-06-2006, 08:07 PM
I had a spontaneous leak throught the ethmoid sinus in 2002. In addition, to the transnasal repair I had a shunt placed. Although I find the shunt annoying I am working full time.

dagaz
11-21-2006, 02:04 AM
Hi sorry it's taken me a while to reply... my Dr's have me on Hydromorph contin which is a slow release pain releaver as well as tylenol #3 for the break through pain. I also spend a lot of time laying flat. :( I hate it but there isn't a lot one can do when the majority of their cerebral spinal fluid leaks out of their nose.

One thing about Hydromorph contin, it can be very addictive if it not used exactly as prescribed. I use it only as I am allowed to, as well I am on a very low dose. 12mg.

Any way that is what my Dr's are doing for me. :rolleyes: