Aa
Aa
A
A
A
Close
Avatar universal

Codman Programmable Shunt

Codman programmable shunt is "killing" me slowly. Low pressure has taken away my ability to function. Sick all the time, and getting suicidal/homicidal, because I can't get my doctor to do anything. He see's no mechanical problem, so won't do anything. He's not seeing a problem, because it just that it's not the adequate system for me. I can't even get to see or talk to him, and of course, I can't get anyone else to see me either. I don't know what to do, just know that I can't keep living like this, this isn't living. Any Suggestions?PLEASE?!?
12 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Hi trouble,

My name is Jeannine and I found your post doing a search on the Codman Programmable Shunt.  I had the shunt placed in 2006 to treat my PTC.  They said it would not be fun at first but I would eventually feel better.  Six months later, when I was still feeling bad, they told me "Oh sometimes some people take a little longer to adjust".  I never have.  I've even used your exact phrase "this shunt is KILLING me slowly".  My doctor also see's no mechanical problem and no need for anymore appointments.  Since 2007 I've actually become homebound because I'm unable to make appointments and I've gained ALOT of weight!...they even sent me to a psychologist and a neuropsychological to see if I might have "mental issues" which I don't : )  AND I told them I had had enough I wanted the shunt taken out but the insurance company said it was unnecessary and would not pay for it.  I told them how the doctor could not get my shunt to the right setting because the machine he was using was not working so he just left it on some other setting. (the darned machine actually had dust on it!!)  They told me that I was lying, lazy, and needed to be more positive.  

Finally, this week my new family physician (I've been thru 4 of them) told me he would find a doctor who is actually certified with the Codman shunt because my doctor is not.  Maybe you can find a doctor who is certified in your area or I could ask my doctor.    

I totally understand how you are feeling.  It has been so frustrating...they put me on this crazy medicine and that crazy medicine,  the almost unbearable pain,  people thinking I'm lazy or just going overboard with it...it just never stops.  And although this comment doesn't showcase it, I try to stay positive and have a sense of humor the best I can.  

I'm very sorry that I don't have any other suggestions or other information to help you but I hope that we can maybe find a good solution to our troubles.

    
Helpful - 0
Avatar universal
Hi Neen,
Glad to know there's someone else out there. It feels better to, at least, not be alone, although I wishes neither of us had to deal with this.

My Neurosurgeon is supposed to be Top Neuro in the country(voted by his peers, not his patient, I would say. He refuses to even see me, much less replace the stupid thing.

I have tried to stay positive, but just can't do it anymore. I can't even function function the way things are now. Everyone tells me to be thankful because so many people are so much worse off than I am, but I remember a much better life pre-codman.  
Helpful - 0
Avatar universal
My daughter has a programmable shunt and since it was turned up (almost to the top) she has had severe emotional problems. Could these things be related?
Helpful - 0
Avatar universal
Not to alarm you but my Dad had the shunt and after feeling so bad for so long he gave up and shot himself. I have often wondered what the suicide rate of people who have had this surgery. Please help your daughter in any way you can. I should have done more for Dad.
Helpful - 0
Avatar universal
Oh my god!!! I knew it...... I knew i wasnt the only one! WHO DIDNT FEEL RIGHT AFTER THIS WAS PLACED. It was placed in may of last yr after my original broke since i was six.ive had that one since birth. Thirty one now. But now i suffer severe deppression,anxiety,cant work and the drs wont do anything because they see nothing wrong with my shunt... Im just so happy i found this site... Now im goin to show my dr. Im always dizzy,on a walker. And yes to the lady who had the question yes the emotional problems r related. Now i have therapy one a week, now and pt..nice...sarcastic.....
Helpful - 0
Avatar universal
We are having major problems with the Cogman shunt AND the doctor. They feel the shunt is functioning properly, even though my wife is in severe pain. We wish we had never gone with the doctors at Sacred Heart in Pensacola, FL, and certainly wish we had not moved forward with the Cogman shunt procedure. The doctors are too scared to do anything further that might help and tell us to go to the ER if the pain is too bad.
Helpful - 0
Avatar universal
I have a Codman programmable VP shunt that I have had since 2-16-12.  I had it reset a month after the surgery, and for 4 months had no problems.  I call it the "4 month curse", as with my other types of programmable VP shunts serious head pains would require a NS's resetting because of how fast or slow the  CSF flow was draining.  I was set at 3 when I left surgery, then 1 month later needed to be reset to 4, and now, 4 months later, and last Thursday, my doctor tried me on 5, but today, on Monday, had to set me back down to 3.  I have headaches sitting up, walking around, looking up or down, and if I lie down too long.  I had dizziness this morning, but the resetting has helped that.  I could use anyone's support and prayers right now.
Helpful - 0
Avatar universal
I couldn't understand how it feels to have a shunt in your head till i read this page. The wife of my best friend had an avm which at age of 30 gave us a surprise hello and caused a brain hemorrhage. ever since their lives were never the same. She now has about 1.5 years they put the codman shunt in her head and never complained about anything else other than discomfort on her skin in that area, but she is a strong girl and has a lot of support from her family and friends. Maybe she does have headaches and depression but her husband is doing a very good job on keeping her happy... he is a nutcase himself.

So now i am looking for a candidate valve replacement because of a clogging problem that occurred in the valve input. The doctor seems to be open to suggestions so we will probably make some. Trouble68 i would love to hear more from you.
Helpful - 0
Avatar universal
I haven't been on here in a long time. I got my doctor to finally reset my shunt, after they threatened to have me arrested because I wouldn't leave the emergency room at EMORY last year..That's when we found out that the idiots had no record of that surgery, nor any of the other over 30 surgeries that I have had there. My regular doctor didn't do the emergency surgery in 2003, when this one was placed, and doesn't even use the Codman, or know anything about it.Things seemed okay for a while, but now I'm having more problems, and because of no records, they are telling me that I don't even have a Codman now, which I know is bull, because the doctor that did it told me it was, and it has already been readjusted once. I am looking for a specialist with the codman. Anybody know one? Anywhere. Thanks
I'll be praying that we can all get some relief. I sympathize with the dizziness, and everything else. I have gotten to where I can barely function, again.
Helpful - 0
Avatar universal
My sons valve was broken in 3! Codman programable vp valve. please contact me, we need more in board so that we are heard! ***@****. My son has had the valve since 08, he's been very sickly the past 2 yrs, multiple scans, they thought he had a tumor. They go in to remove the tumor and they see a broken valve, no tumor!
Helpful - 0
Avatar universal
i had a codman programmable put in 2003  that put  it in and than left hospital therefore when i got home it broke loose from where it was i was in severe pain and  ive had trouble ever since yes it is moving around where it plays with my functioning i never know how im going to function from one day to next mine was a birth defect on cerebellum ive had it in for 10yrs and couldnt get a doctor to beleave  me i suffer all my life i had to teach myself because iknew there were things i couldnt do so i had to compensate for what functioning i didnt have people treated me like nothing i said matters. i get headache pressure in head and dont go one day without pain. my first nerosurgeon was great but he had to go back to west virginia to his family. i really wish he could of stay to do my second surgery i wouldnt of been going through what im  going through  now. sometimes i could write and spell words  other times i cant spell the same word im 61 yrs old and still cant get no one to do anything about it, just been tollerating the vp shunt moveing around in head hitting nerves. it went up my neck to my cerebellum and now to left of base of scull. i think god for each day i live, because i know the problem i am having should of took me. the cyst is still there the second surgery i had  she mess up other of her patients too. one was a nurse that took care of me after my surgery gabrielle morris messed up her husbands back i wouldnt take my dog to her ill never have her touch my brain again. had surgery in indiana this is part of my life yes it does make you frustrated i only have god i can trust
Helpful - 0
Avatar universal
I was interested in finding the comments previously posted about the Codman shunt. My son has this shunt, it was put in in April of 2012. It seemed okay until 5/13. Now his life is miserable. Severe headaches after being up, slit like ventricles, horrible seizures and severe pain over top of the valve. They went in and put a smaller tubing in to drain into his abdomen with no results. His shunt setting has been changed from 70 to 180 with no change in his ventricles. They say the shunt is working fine but he is in so much pain and the seizures are lasting now up to 20 plus minutes and they won't do anything. His headaches are intense and he screams every day. The pain in unbearable and he goes into a rage trying to beat his head on the wall so they will take the valve out. We feel as if the shunt valve is not working. If the settings have been changed that much and his ventricles are still very tiny, to us it seems that that the shunt is not functioning. Any suggestions about where to go to get people to listen? This has been going on too long. He is only 11 years old and he has no life right now. They keep sending us to neurologists, psychologists and other specialists who keep pointing us back to neurosurgery who won't do anything. They are also saying the increased seizures aren't related to this at all. In every other shunt problem he has had in the past, he presented with increased seizures. Help...we just don't know where to go next!
Helpful - 0
Have an Answer?

You are reading content posted in the Neurology Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
5265383 tn?1483808356
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease