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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Hydrocephalus (https://www.neurotalk.org/hydrocephalus/)
-   -   Shunt problems causing headaches etc (https://www.neurotalk.org/hydrocephalus/134421-shunt-causing-headaches-etc.html)

tinae1236 10-04-2011 09:51 PM
Codman Shunt and Echo Headaches
 
Hi all,
I am new to this forum and have a codman programmable shunt. I have had hydrocephalus for 41 years I have had the Codman for 6 and I am having echo headaches everything going on the outside echoes in my head when I get a pressure headache and to boot I have a burr hole that just to today started hurting and made me nauseas I called my neurosurgeon of 30 years and I am waiting for a CT scan script and a Shunt series script. Any help would be appreciated.
Tina

hydrotexan26 10-08-2011 12:13 AM
Quote:
Originally Posted by tinae1236 (Post 812061)
Hi all,
I am new to this forum and have a codman programmable shunt. I have had hydrocephalus for 41 years I have had the Codman for 6 and I am having echo headaches everything going on the outside echoes in my head when I get a pressure headache and to boot I have a burr hole that just to today started hurting and made me nauseas I called my neurosurgeon of 30 years and I am waiting for a CT scan script and a Shunt series script. Any help would be appreciated.
Tina
Hi Tina,
I too have a Codman programmable shunt. I've had hydro for 27 years now (ever since I was 2 months old). For most of my life I had a VP fixed pressure shunt and in July I had a revision due to the old shunt slowing down. Since my surgery I haven't been feeling the greatest. My headaches continue and dizziness is a daily occurrence. My neurosurgeon adjusted the setting on my shunt 3 times since July. The last time I called them to report my ongoing headaches he said my shunt was not the problem and referred me to a neurologist. My neurologist has done a series of tests to figure out the culprit of the headaches (migraines, etc.) May I ask what echo headaches are?
Misti

Peter Landale 01-19-2012 06:59 AM
Shunt pressure causing headaches
 
My son suffered from a brain tumor aged 2 (craniopharyngioma). He is now 21 and his current VP shunt was put in place in 2001. In the last 2 years, Every 3 months it appears to go through an episode which starts with twinges in the shunt pipe (resevoir) at the back of the head. This then increases over about 5 days and it is as if the shunt is blocking and then partially releasing but the pressure is remaining and growing. We eventually end up going to hospital and nothing shows up on scans etc. We are going through one of these periods at present and my bet is we will be in hospital tomorrow. It tends to the clear itself when the pressure gets so great it is unbearable. Anyone have had a similar experience??

Peter Landale

TRyan722 01-21-2012 10:03 AM
New
 
Hi I just joined this group today! I am 24 and have had the shunt since birth. I have never had any problems with it at all. Rarely get headaches or issues with it. Right now though, I woke up this morning with a headache and everytime i move my head it hurts, but if I keep it still, it doesnt hurt as bad. Could this be a malfunction? Should I see a neuro, I have never been to one since birth.

CNAJACLYN 09-09-2014 02:17 AM
Quote:
Originally Posted by ian richard (Post 701562)
I WONDER HOW MANY PEOPLE OUT THERE SUFFER ON GOING PROBLEMS WITH FAULTY SHUNTS I HAD A MEDTRONIC STRATA VALVE ADJUSTMENT BY MAGNET THAT KEPT LOSING ITS SETTING AFTER 13 TIMES. HAVE HAD IT REMOVED NOW NO PROBLEMS WITH HEADACHES NAUSEA ETC SINCE REMOVAL 3 MONTHS AGO, CAN ANYONE SUGGEST HOW I CAN START UP A GROUP TO GET AN IDEA OF HOW MUCH OF A PROBLEM THIS IS. WOULD LOVE TOO HEAR FROM OTHERS OUT THERE. THE MAKERS SAY IT CAN'T HAPPEN I HAVE KEPT CLEAR OF ANY MAGNETIC SOURCES. I HAVE HAD NO HELP FROM MY N.S OR MEDTRONIC REGARDING THIS PROBLEM. CAN ANYONE HELP :grouphug:
Yes Richard, I too just had a strata valve put in and they put it in my frontal lobe. It was moved from behind my right ear. I have had horrible headaches and a heaviness of my head EVERDAY since my surgery on July 29th, 2014. I go to the Neurosurgeon tomorrow again. I hoping he can find out what is causing these headaches. Good luck.

Shunted96 10-28-2014 06:49 AM
I thought it was only me!
 
Quote:
Originally Posted by lalahecky (Post 777805)
I have been dealing with horrific headaches, dizziness, nausea and vomitting for nearly 2 weeks. I was told that I have slit ventricle syndrome and now the apparently the ventricle has collapsed on the shunt. My shunt {medtronic strata w/siphon control} cannot depress the resevoir, it's just rock hard. I apparently have very low icp according to the shunt tap, but I had a lp also and they said the pressure was 10.4. I am growing very concerned since everything I read tells me that the shunt not depressing indicates a blockage and now I'm supposed to go in and have the medtronic person reprogram it at a higher pressure. My concerns are two-fold, since my shunt also has an anti siphon device, which clearly did not work, the valve cannot depress indicating blockage, what in the heck would make them think that it could be reprogrammed at this point? I am very concerned, since the possible complications at this point are severe. I do not know what to do??? The neurosurgeon was set to switch out my shunt, but says I'm inoperable since the ventricular collapse...what the heck is going to happen to me? All I can do now is lay down and even at that I still have a headache and nausea. They gave me zofran for nausea, but I'm useless anymore...please any info would help
Hi, I am dealing with the exact same symptoms except rather than dizziness I have double vision. I am wondering whether you have gotten an answer to what's going on with you that could be of help to me. It would be greatly appreciated xo

pogo 10-29-2014 10:27 AM
Quote:
Originally Posted by Shunted96 (Post 1105418)
Hi, I am dealing with the exact same symptoms except rather than dizziness I have double vision. I am wondering whether you have gotten an answer to what's going on with you that could be of help to me. It would be greatly appreciated xo
If you have slit ventricles, sometimes programming it higher can help. My daughter has slit ventricles/codman+a low flow valve (replaced the asd, it didn't do enough) and has been over draining as her pressures have been going up over time (went from 3cm on just a codman to equivalent to 21cm, but with the 2 valves think it is 13cm, don't have my notes with me). Going higher did stop some problems with double vision.

But also thought double vision could be transient blockages, it is just weird.

Shunted96 10-29-2014 06:23 PM
Quote:
Originally Posted by pogo (Post 1105587)
If you have slit ventricles, sometimes programming it higher can help. My daughter has slit ventricles/codman+a low flow valve (replaced the asd, it didn't do enough) and has been over draining as her pressures have been going up over time (went from 3cm on just a codman to equivalent to 21cm, but with the 2 valves think it is 13cm, don't have my notes with me). Going higher did stop some problems with double vision.

But also thought double vision could be transient blockages, it is just weird.
Hi,

My neurosurgeon tried changing my pressure from 1.0 to 1.5 but that only made my headaches worse. (Metrotonic Strata Valve; I apparently have slit ventricles). Turning up the pressure only made me get unsteady on my feet as well as all my other symptoms. None of them got better or worse except the headaches. My symptoms; vice like headaches that are also pounding and are all over head and 24/7 never go away, double vision, nausea & vomiting, reservoir pain, tubing pain, unsteady on feet, noise sensitivity and headaches don't respond to pain medication.

All suggestions will be considered, I just need answers xo

Thank you

Kitt 10-29-2014 08:05 PM
Welcome Shunted96. :Tip-Hat:

pogo 10-30-2014 01:07 AM
Quote:
Originally Posted by Shunted96 (Post 1105654)
Hi,

My neurosurgeon tried changing my pressure from 1.0 to 1.5 but that only made my headaches worse. (Metrotonic Strata Valve; I apparently have slit ventricles). Turning up the pressure only made me get unsteady on my feet as well as all my other symptoms. None of them got better or worse except the headaches. My symptoms; vice like headaches that are also pounding and are all over head and 24/7 never go away, double vision, nausea & vomiting, reservoir pain, tubing pain, unsteady on feet, noise sensitivity and headaches don't respond to pain medication.

All suggestions will be considered, I just need answers xo

Thank you
Hi Shunted96,

I don't like the strata because it has big jumps and our daughter is sensitive to small pressure changes, she has super poor compliance which predates slit ventricles. Thankfully we got rid of the initial strata when she needed lower pressure than the strata would go - figured that out the slow experimental way going from 1.5 to 1.0 to .5 and looking at short term improvements with each adjustment down plus pressure readings were always lower and other stuff. The down side is the strata is ok with MR and our previous codmans got harder to reprogram after MRs, haven't done them at all for the current system. Have you ever had pressure monitoring done? Maybe something like an Orbis sigma valve would be a better fit (that was the second choice of the two different surgeons who've operated multiple times on our daughter, the one who loves strata is not her primary surgeon). Your current setup sounds miserable although the surgeon trying something is nicer than people's stories of them not listening. Really think growing up and having to stop seeing pediatric surgeons is going to be horrible.


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