Shunt problems causing headaches etc
 

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:

Medtronic Strata Valve issues for NPH
 

5-18-2011 I agree. There must be more people who have had issues with this medically popular valve...me for two! I also note there is a MAUDE who reported their experience and adverse event report, etc. Their problems resolved after their n.S. replace the Medtronic with an Integra, etc. I have also been given the run-around about issues with this valve. It is not what it's cracked up to be from an adult functional standpoint IMO. Positional headaches are likely due to "overdrainage". Been there done that.

I have a Strata valve currently and it has caused more issues than i can count. I have bad pressure when i change positions like lying down to standing up or vise versa. Sneezing, coughing, even pooping. I am in terrible pain and can't find a neuro surgeon in Kansas City with my insurance coverage that will touch me.

Hi all ...first lemme say I'm new here
I too have a adjustable shunt I have had it since 09 and it seems like o have more headaches then not
I dunno what the problem is but every time .I get a ct scan they say my ventricals are enlarged but they never adjust the pressure or even check it
My head is pounding right now as I type this
My balance is off and blurred vision ...sometime I feel like someone should decapitate me
Just so I don't have to deal with this anymore ..I have had just about 20 or so surgeries on my head ...in 09 they had to revise it approximately 5 times
In 01 15 times half the time I can't even be a father to my 2yr old son
This isn't fair to him he didn't ask to be here ..I feel like a piece of crap

Please help me!!!
 

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

New to group
 

Hi everyone! I'm new to this group. Just looking for some advice. I've had Hydrocephalus since birth and my most recent shunt revision was in 1997. I have a VP shunt so reading about all the new programmable shunts is interesting. I've been having some symptoms over the past 2 weeks and they are leading up to a shunt malfunction I'm afraid. My dr isn't getting in any hurry about doing anything to fix it though.

I looking forward to talking with everyone about this and hope to offer any advice to those that need it or would just like to talk.

Hydrotexan26

I finally got a correct diagnosis 11/2010 after living with constant severe pressure pain in my head for over one year. I had many symptons one year prior to the pain in my head: constantly sleepy, hearing a clicking noise in my ear, numbness of face and head, confusion, mood swings, problems with walking and balance. I was diagnosed with Chiari I Malformation and Arnold's Chiari. Chiari will show up on a MRI if read correctly. After my Chiari diagnosis 11/2010, I had a MRI study of the spinal fluid in my head. That is when I was diagnosed a few days later with Arnold's Chiari. I had to immediately have a VP shunt put in my brain that allows the spinal fluid to flow to my abdomen. That gave me immediate relief from the pressure pain in my head. However, it did not get rid of the pressure pain in my head when I sneezed, coughed, gagged, or laughed. In Feb. 2011 I had Chiari Decompression surgery to make the opening at the base of my brain larger. I also had to have some verterbrae removed to relieve the "brain tonsils" from being herniated through the small opening at the base of my skull which was causing the remaining pressure pain. This is a congenital condition and the doctors have no idea why I never had any problems from it until age 48. It took several years for this to be correctly diagnosed. I hope this information helps someone that may be having the same problem. Unfortunately my short and long term memory and my eyesight have been affected due to all the pressure to my brain. I still have some pain but at least now it is not constant pain.

Please help me !
 

I had 19 shunt revisions a few years ago, and now have a Codman-Hickman programmble. To make a long story short, had the codman-hickman not been installed, I wouldn't be here, but the quality of my life is poor. I vomit every day, and the headaches are horrendous.
************************************************** *
As far as advice to YOU, have to consulted with neursurgeons from major University Hospitals etc. ??? IF the doctor gave you Zofran, they obviously think there is something wrong. Keep asking questions ! Some one with have an answer.....

carrection on date diagnosed 11/2009

correction on date diagnosed 11/2009

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

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

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

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.

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.

I thought it was only me!
 

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.

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

Welcome Shunted96. :Tip-Hat:

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.

Hi Pogo,

The mysteriousness of all this is that I had the exact same symptoms last year and eventually had the shunt changed in October 2013 but then began having symptoms again in November 2013 and had the shunt once again changed in June 2014. But now began having symptoms in August 2014. I hope i can find a more permanent solution. I will suggest the Orbis Sigma valve to my surgeon but being in Australia it's hard to know what's available to us compared to the US.

Thank you for your suggestion xoxo

I'm not sure I would suggest specific shunts to a surgeon. Sorry, didn't think to ask before... Have you read up on slit ventricle syndrome? There are some papers/talks from Dr Rekate, some available online that discuss a lot of the svs issues & treatment options and how to classify patients. His stuff has evolved a bit so if you see different things, the point it was released would explain many differences you might spot, recent probably better for patients. They have an approach that might be worth asking your surgeon about. Note there are some svs patients who no longer need a shunt. He is *the* expert on this stuff. He used to be a Barrow Neurological Institute, think he's currently in NY state.

let people know how it goes & best wishes!

-Pogo

Hi Pogo,

I will look into Dr Rekate. Thank you for your suggestion. I will update you as it goes on

- Shunted96 xo

Ian, I'm glad you got removal. I to, have a strata valve and it has lost it's setting twice now. I go back on the 25th of June for another check up. The on-going headaches are getting to be really tiring! Unfortunately, because I'm shunt dependent, I can't have mine removed. So far I take norco for the headaches, but due to it's addictive nature, I'm trying other meds. I"m hoping to get one that works soon.
Jaclyn