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

Hey Gerry,
After 10-15 years of having a shunt I have recently had a change of shunt, then a valve change and now my shunt is at the back of my head. I have had 3 operations this year (so far) and things still ain't good. I too have been told things will settle, which is of very little comfort at all, as the headaches are just bloody constant. With periods of pain that are beyond belief. I want to return to work but at the moment this just is not a possibility. I can clearly empathise with your daughters idea of a sentence. I have found that the Medicos often have no idea of the intensity of pain and the idea of 'just take a panadol' is a joke.
During one of my recent hospital stays (in Adelaide) they did a ICP test. Fistly they started with a MRI scan but, it seems, this was not accurate enough and the fact that my pressures varied depending on my position altered the result. So they bored a hole in my forehead on the upper right side and placed a pressure gauge within the cranium. I was told it would be in there for 3 days. The inserted it at about 11am, by about 10pm, I was having BIG problems. I was told my pressures should have been somewhere between 6-12, mine were 80-90 and that was after less than a day. I was shot off to theatre and another shunt was inserted at the back of my head, but they have left the catheter tube from the previous shunt within the brain in place, the valve has been removed. So now I have two tubes in there. The distal end of the shunt (in my belly) fractured and they have left that floating around in there too. But that was my recent experience with ICP test.
I hope things do improve for your daughter, but my advice would be, don't get your hopes up too high. I say this cos I did and it was real hard when I came crashing back down to this reality. Again my advice would be to think things will stay the same, then if there is an improvement, its a huge bonus rather than another letdown. 'Pain Management' has now become my buzz word. 'Its all just a case of pain management' and I must admit I'm not a very good manager. Its a fine line between pain relief and being spaced out of my mind and this is very, very frustrating (to put it mildly).
Hope it helps and good luck with it all. It can be one hell of a rollercoaster for everybody involved, including family, so good luck.
Merl1n