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I see a lot of posts about NPH but from what I have read of my mother's Dr's notes, she has compensating hydrocephalus and has had it all of her life. From what I understand, the brain compensated for the missing area, but is not able to as much any longer. I wonder if anyone else has had this form and what their experiences have been.
I will say she has a shunt, that she told had a high probability of not doing much for her, but she got it anyway. It improved her gait temporarily, but then she started to decline. She was told by that Dr there wasn't anything more he could do. I now have a Neurologist and a Neurosurgeon with differing opinions on what to do.
The neuro has stated that she has significant cognitive impairment but according to his tests not clinical Alzheimers or dementia. He also says a new shunt might improve her gait, but the cognitive damage is already done. So at 79, mom isn't interested in any more procedures.
So, any experiences anyone wants to share would be appreciated.
I wish I could help. This must be devastating to you and your dear mother. I know there are many different ways to get dementia, not all caused from brain cells dying like in Alz, so hopefully the procedures her doctors suggest will give her more quality of life if she is willing to undergo them. A lot of people with dementia become depressed as well, and I'm sure your mother has been evaluated for it, but if not, perhaps meds will lift her spirit and she'll be more inclined to do things to improve her quality of life.
I wish you luck as you continue to search for options and of course I wish you and your mother the best.
The cognitive response to shunting is not as good as the gait response, which is unfortunate.
Also unfortunate, the neurosurgeon is a proceduralist who stands to profit from a shunt adjustment or revision.
It's hard to balance the risks of surgery against the potential benefit for gait, but not cognition.
Fortunately, there is testing they can do to try to establish a response to removal of CSF.
The Miller-Fisher test involves a baseline gait assessment by PT and assignment of a Tinetti score. They then do a lumbar puncture in the neurosurgery clinic, measure the opening pressure, and drain off a large volume of CSF and redo the gait assessment/Tinetti score. If there is good improvement, this suggests that your parent would benefit from a redo of the shunt.
If your mom is then willing to undergo a redo shunt, I would insist that it be a programmable/adjustable shunt. This would allow in future that adjustments be made to the flow settings and thus not require shunt revision, if indeed the current shunt is not working very well (or working too well, as excessive CSF removal can cause it's own set of problems).