[lavelle3]

Hi

My 31 year old daughter was diagnosed with mild hydrocephlaus at the age of eleven. She has had five operations including the original placement of the shunt. Her most recent surgery was done one month ago and I still have not got an answer as to why the surgeon placed the normal pressure valve (Delta 01) AT THE BACK OF HER HEAD as opposed to where the much smaller one was located? Because of that she can not lay flat on her back, not only due to the location but size seems so much bigger than the last. Because surgeons don't want to operate on people with shunts if their tests don't show any anomaly, despite the fact that her headache levels were 9 and she was on morphine three times a day and incapacitated AND had affected her vision. She was scheduled to have the shunt study using the nuclear medicine dye but at Brisbane Royal Women's Hospital (RBWH) suddenly the ink/dye has been banned. However, since the operation (they found the valve was blocked due a back long of the CSF coming back up the tube - it began with abdominal pain) she is still getting headaches pain level 2-3, with more severe ones that come in waves (pain level 6)and can stay for half a day and she loses focus. The neuro we saw yesterday said it can take 6-12 months to settle down, which my daughter felt was a jail sentence. Anyone out there with a shunt at back of head? She also still feels pain at base of brain, but they have ruled out infection. Her other problem was the tubing that tracks at the top of her abdomen is raised - again they said that will settle down. And how do they test ICP?

Gerry