Hi Merl1n,

I don't recall if you've mentioned when you were first shunted. For those shunted as children, slit ventricles are documented issue. My child has a history of slit ventricles / low compliance so when I tell surgeons that I clearly follow up by noting that imaging can miss what's going on, history of at least one obstruction without enlarged ventricles, yadda yadda... Then the surgeon on call is warned up front that symptoms are more important than images. I asked our child's surgeon to measure pressure during the surgery because I thought there could be a problem with the programmable valve. I know that isn't a completely accurate measure but I think it helped. He indicated it would mean chucking the old programmable and you know how conservative surgeons can be about things. Sometimes I think that is part of the patient problem when trying to get an issue addressed, our risk assessment is different from their risk assessment and QOL then tanks. Our past issues with the programmables is they get harder to reprogram (codmans not the strata we first had, but strata has big steps between settings that don't work) after a few MRIs. But the fixed pressure valves are also not an option because the pressures have been changing, actually have one of each in her shunt system. There is a reason OSV is not a good choice anymore but I've forgotten why. Bet there are more than a few adults who also have issues with imaging not telling the full story, they just don't have studies telling the docs about ways this comes out.

I don't think the number of revisions matters, our child's hospital experiences are rather mild compared to people with other conditions, just wish there were fewer doctors to deal with So it's just something we deal with. I think the parents whose child goes 20 years without a problem are more affected by a sudden shunt crisis. We aren't under the same illusions.

-pogo