Hi! I have had a shunt since I was four and recently had a revision in 2010 because the LP shunt was disconnected and they put in a programmable VP shunt. I had a few more surgeries due to infection, and have been having headaches and stomach ache, which haven't been figured out yet. But the nice part about programmable shunts is that if you are experiencing headaches, you can have the pressure adjusted to make the shunt drain more or less.

Hi! I have had a shunt since I was four and recently had a revision in 2010 because the LP shunt was disconnected and they put in a programmable VP shunt. I had a few more surgeries due to infection, and have been having headaches and stomach ache, which haven't been figured out yet. But the nice part about programmable shunts is that if you are experiencing headaches, you can have the pressure adjusted to make the shunt drain more or less.

My daughter had an AVM bleed at the age of 15. She had hydrocephalus then, but because of issues of having acquired a pseudomonas infection in the brain at the time and she had to have the avm removed, we were leary of an additional shunt insertion. She was able to tolerate not being shunted until 2009 where she did not have any headaches, no nausea or issues prior. When she was 21, she developed a fine tremor and vague symptoms which prompted me to bring her to emergency. They found enlarged ventricles and shunted her with a medium flow shunt. That's when the nightmare of all kinds of issues began. Her eyes rotated non stop, her left cranial nerves were affected, her headaches were so severe that she was screaming in pain if she was elevated, and were only slightly decreased when lowered to a laying position. Then a programmable shunt was put in, with more relief of her symptoms. Another shunt was also put in to rescue the left cranial nerves ( she had a non communicating cyst where the AVM had been which got larger as the other shunt drained)
Well, things got better, but she still has many issues. She actually was better before she was shunted. When we want the shunt adjusted , we need to check with the neurosurgeon, who is reluctant to adjust. So my daughter has headaches, worse when standing, tremors , also worse when standing , and balance issues. I wish she could be as she was before she was shunted. But, I know that she needs to have a shunt. I believe it is flow issues that need fine tuning, but the neurosurgeon is reluctant and not willing to spend the time. Is there a neurosurgeon out there for adults who will? We are from Canada, but will travel to find some answers.

Ohh wow, I'm not the only one. PHEW.
In January this year after 17yrs of a fixed pressure shunt I was fitted (makes me sound like a car) with an adjustable valve. The first one died within 8 months and I had another fitted in August. I had learnt how to manage the ongoing headaches over the previous 17yrs and sure it wasn't easy but I could cope and function. But since the August procedure the pain has been Bad, very bad and oh my god. I have a constant cloud of pain with periods of intense pulsating bolts of pain. The previous headache, off and on, affected my right eye but now the constant pain is in the right eye passing thru the bridge of my nose and affecting my left eye. I relate the pulsing to somebody shooting a steel bolt from the back of my skull out through the bridge of my nose and exploding.
The dr's have been less than helpful as they have 'fixed the problem'. I have queried the pressures. The response I received was "there should be little to no problem. Lets do a scan and see. Come back in a month" so I wait. I have only met 1 other adult with a shunt, whilst in hospital recently. She had developed an infection and was basically bedbound. The dr's had removed a portion of her skull to allow room for the swelling due to the infection. As they say "...but for the grace of god, go I". She was in a much worse position than me. And there is no way I could make any comparison.
But in reading some of the comments within this post, I can see many images of myself, which is comforting to know.

Thanks
Merl1n

Worse when standing indicates over shunting. She definitely needs someone who's willing to do the fine tuning. I'm in Edmonton, there are several excellent caring surgeons here who can help her. How to gain access to one of them might be another issue but maybe your GP could send a referral?