CSF shunt overdrainage

Question

I have had a Codman programmable shunt for 5 years that is "Killing" me slowly. I have no energy, no strength, no appetite, always sick(headache, nausea, vomiting,etc.), and many other symptoms that are severly limiting my life, beyond what I am willing to accept anymore. CT and x-rays are normal, because it is not a shunt problem. I have read that these are dynamics of the Codman Programmable shunt. I have read that the continuous flow shunt is considered superior for ambulatory individuals , which I am hoping to remain a part of. Would the continuous flow shunt help in any way? My neurosurgeon won't even see me, because he see's no mechanical problem in the current shunt, and won't change it to the other, despite my coninued STRONG request. Any suggestions, PLEASE?!?

This discussion is related to Shunt Overdrainage/Subdural Hematoma.

jadiee_x · Answer

Hi, 
I have a fixed valve at this very moment, and have had for almost all by life since having a shunt, minus 3 weeks!
I had a medtronic strata placed in november due to overdrainage of my fixed shunt from the july before.

Those 3 weeks of having that prgrammable shunt was an absolute joke!!
Could never get a pressure which was right. I was getting strange noises in my head, strange 'high' feelings each time it made these noises too.

I must of had the setting changed about 5 times in the time i had it, each time i went back to hospital to have the setting changed, the setting had changed by itself to what it was set to previously. It was just playing games with itself.

The good thing about programmables is that you can have the setting changed without surgery which takes 2 minutes! 
I strongly suggest you ask your NS for a setting change, or atleast ask for setting check to see if its still on the setting its suppose to be on, as things do set them off so that they change.
I think mine was just a horrible faulty thing, thank god for the infection that came after those 3 weeks, it was the only way that thing was ever gonna be destroyed and replaced with a fixed valve again.

And the comment above me from Dia (an online friend) :) I say take the advice, join the site and also facebook if you have it, we have a huge community of people with shunts, should it be from a tumor hydrocephalus or arachnoid cysts :)
Good luck :)

arachnoidcystgirl · Answer

I am having the opposite problem, I have a delta valve and that is slowly killing me! I always thought I would be better once getting the codman valve, but now I am not so sure.

My shunt valve has move down my head about 1/2 inch and the tube through my neck and abdomen is all messed up. I have had no energy, but my doc thinks it is anemia. I am not sure what is going to happen, but if you would like to talk about this at arachnoid activist, I would be happy. I started the website because neuros often dismiss the symptoms of arachnoid cyst and hydro patients.

Come on over, just arachnoidactivist *******