non-programmable vs. programmable
 

OK...my son has had a standard shunt for four years- since he was 12 weeks old. We loved his nuero but moved from the east to the west and have now found a new dr. He wants to change it to a programmable. He says that Cole's ventricles are slitted, however, he did not run a current ct. He based this on his scan from last year, but his east coast dr. said they were enlarged (due to an illness- he's very suseptable to ventricle changes when sick) and returning to normal. So, large for one dr., too small for the other. I know his previous dr. was not a fan of the programmables, and the new one is not a fan of standard. We really don't know what to do. He says that we have to change it within the next five years, (although he really wants to do by the end of the year) before the brain gets used to the "under" pressure. He said that we could look at blogs of people with standards (adults) and find out what we needed to know, but all i've found is negatives about the programmable. We are definitely going to ask for a repeat scan.

Anyone switch from a standard to a programmable? Do you like or hate it?

My son had a fixed valve(non-programmable) shunt placed in June 2007. The fixed shunt overdrained and cause space between the brain and skull, and he developed a subdural hematoma (brain bleed). The hematoma caused him to have a seizure, which prompted us to take him to the ER for scans. This happened in November 2007. The doctor determined the best course of action was to replace the fixed valve on the shunt with a programmable valve, so they could control the amount of drainage appropriate for the pressure. The programmable shunt valve has worked great, and we have not had a problem with it. They are able to adjust the drainage/pressures as needed. The only thing you have to watch for with programmable shunts is when your kiddo has an MRI, the shunt has to be reset. This is because the shunt is programmed by a magnet, and the magnetic field of MRI can move the setting of the shunt.

I hope this information helps, since you said you had not heard anything good about programmable valve shunts, I wanted to let you know that it is working for us. My son is now 4, and developed hydrocephalus secondary to a Vein of Galen Aneurysmal Malformation.

Good luck in your research.