As someone who has had 6 shunt related surgeries since 2009, I can relate to all you have been through and my heart goes out to you. Since I was a baby when I was diagnosed, my hydrocephalus was considered congenital, in part because diagnosing me with acquired hydrocephalus had potential ramifications against the doctor that delivered me (that is a whole other story and issue) but my neurosurgeon told me last year that it was likely due to the massive hematoma I received due to my traumatic and difficult birth. I had almost no problems throughout childhood, except for 2 uncomplicated revisions at age 4 and 18, my hydro roller coaster started at age 29 and I'm still on it :roll eyes:

My point is I have learned that not enough is known about how the brain works or how different systems interact within the body to really figure out what is going on when people with hydrocephalus have problems. For example, I think my current symptoms, polydipsia (extremely thirsty), polyuria (have to go the BR all the time), dry mouth, inconsistent fatigue, dizziness, nausea, occasional problems with focus, coordination are related to my pituitary/hypothalamus being out of whack due to the change in ICP to 'normal' when I was given a programmable shunt in 2009 then lost 85lbs. For those that don't know, your pituitary/hypothalamus works on a negative feedback loop, sort of like Central Air or Heat in a house, so I think my A/C is functioning like it still cools a 1800 sq ft house when now cools a 1000 square foot house. The problem is all the usual indicators of hormonal problems, TSH, CMP, are within normal range, so my primary care doctor was like "we are all tired".

Thankfully I have a friend who is an extremely intelligent doctor who helped me to problem solve the issue and recommended I send a bunch of my very detailed knowledgable questions to my neurosurgeon before my appointment so that he can be more prepared to answer my questions and also recommended I check to see how much sodium I have been eating to see if that is throwing off the numbers, i.e. I may be taking in so much sodium that my levels are normal.

The reason for this posting is basically to say don't stop asking questions and if you are concerned about something not being right, then the doctor should at least explain to you WHY you shouldn't be concerned, and if the answer doesn't sound right then get a second opinion. If the answer is "I don't know" then that at least is a place to start and the goal would be to figure out how you and your doctor can work together to find the answer.

Good luck!