Originally Posted by lalahecky

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

Originally Posted by Shunted96

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

Originally Posted by pogo

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.

Originally Posted by Shunted96

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

Originally Posted by pogo

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.

Originally Posted by Shunted96

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

Originally Posted by pogo

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