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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).
She actually has an adjustable shunt, I believe. I didn't know there were non-adjustable shunts. It was adjusted a few times after she first got the shunt. The neurosurgeons have actually stated that there is nothing more they can do. The neurologist that she saw is the one saying that she should go back to a neurosurgeon because as far as he is concerned all shunts work. How can this be when the neurosurgeon who placed it only gave her a 60% chance of it working and previous Neuro's advised that she really wasn't a candidate and that her risk of stroke was too high?
From what I understand from the neurosurgeon visit, the shunt is draining as it should be, but it is not fixing the problems. Has anyone experienced this?
She just saw a physical therapist that she saw at the beginning of the year. The PT thinks mom has had a significant decline both with leg use and cognitive.
Mom hates doctors and thinks they are all just out for the money, unless she gets the answers or fixes she wants. So dragging her to multiple Neuro's for 2nd, 3rd, 4th opinions is just too much. I do have her going to a new neurologist at the end of this month to evaluate her and hopefully start a relationship with a dr that wants to listen to my concerns etc. This last neurologist told her the PET scan indicated that she didn't have the degenerative alz or dementia, but didn't reaffirm to her that she still had significant cognitive impairment. So I wheeled her out of that appointment with her thinking she was fine. I called him later and he confirmed to me that she truly has impairment.
My husband and I and my father (who is deceased) have believed for 3+ years that she has anosognaosia and doesn't recognize she has a problem. She says that she has balance problems for why she is in a scooter and not walking and she thinks her memory issues are just getting old. I remind her of the hydrocephalus and she kind of just shrugs at it. It is hard to help someone who doesn't recognize that they have a problem or what the problem truly is.
My 86 year old dad has NPH (shunt inserted at about 82). The shunt did very little. We were told the shunt generally works better on younger people who are diagnosed pretty quickly. My dad continues to decline. I had to fight for the shunt, they didn't think it would do anything but the surgery was so easy, I thought it was worth it in case it delayed the progression.
A new shunt will not do anything. I am sorry to say this is how NPH progresses. My dad is having more and more issues with executive functioning, and some memory. He also thinks nothing is wrong with him. He is in an assisted living - no longer walks due to failed hip replacement. I don't think he would be able to walk even if the hip worked.
There is a very good NPH group on FB where you can join and ask questions. It is called by the long name not NPH.
My dad was diagnosed with Alz for 5+ years by a lame doctor who was too lazy to send him to a neurologist. By the time I got him to a neurologist so much damage had already been done.
I don't think the neurologist is right about this. A new shunt is unlikely to help in any way.
Thank you! The neurologist said it might help the walking but not the cognitive. But my thing is that after the surgery she would require a lot of PT and I know her attitude towards PT is questionable and as soon as the sessions stop she stops even though they are supposed to continue with the exercises.
She is in PT now because she says she wants to walk again and my brother suggested she go to the exercise room to try, not knowing it isn't monitored. So I got a PT script for mom for walking but also transfering and falls, which are getting worse. PT says they don't want her to try walking in her apartment because she is that unsafe. That is what I thought would be the case, but now it is official.
I don't understand why the neuro thinks a new shunt will work, if the existing one is working and has been adjusted. Is a newer shunt going to allow more fluid to drain?
I think NPH is just a very sad condition that always worsens eventually. I have never heard of compensating NPH. Did she have a head injury at some point?
I think this is the group.
My dad now has a fatal lung condition - pulmonary fibrosis. There is no cure and no effective treatment. He thinks the doctor is wrong (typical) and nothing is wrong with him. Honestly, I can't believe he is alive at this point. He has had critical sepsis 3 times in the last 5 years.
I feel your frustration but sometimes there are no good answers.
BTW - my dad's neuro was also very positive about what the shunt would do, but the neurosurgeon told me it would not help him. The surgeon was right.