Originally Posted by pogo (Post 1105696)

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 (Post 1105808)

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 (Post 1105814)

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

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: