NPH and dementia unspecified

Anonymousjpl123

Happy Sunday all caregivers. Just wondering if anyone else has NPH diagnosis for their loved one. My mom has this ( I’ve posted a lot about it on the Caring for a Parent forum.).

I finally scheduled shunt surgery and she refused. It’s the ONLY treatment available for what she has. The Neurosurgery physician assistant followed up last week, and admitted that though he was sorry she refused surgery, he had been worried about whether she could handle recovery given her cognitive challenges.

She’s where she needs to be: there’s another resident in her MC facility with the same diagnosis, and per her daughter she’s getting excellent care. They have an MD do checkups every week, nurses on staff, and now she starts PT 3x a week (they were holding off until surgery).

Most NPH support groups focus on caring for someone with the shunt. I’m trying to get a sense if others here also have NPH diagnosis. It’s a very hard road. Hard to say what progression will be. Just looking for others with this dx. Thanks and hope you have some peace today.

Linda Iltis

My husband also has the NPH issue. He was optimistic to do the trial at first, but we met with a neurosurgeon who described the spinal drain trial in more detail, and we both got a bit nervous about it. I feel he should try it, but he is not inclined now. He had colon cancer stage 3B surgery, followed by oral chemo, then had to have a heart valve replacement. All within about 4 months. Spending 5 days in hospital for the drain trial is really unappealing now.
I have heard that craniosacral massage may give relief for NPH, and we will probably be trying that. He is fortunate to be able to walk, but urinary incontinence and cognitive confusion, aphasia, are really frustrating for him and me. I'd love to hear whether others have proceeded with the shunt and how successful it was.
Thanks! I'm grateful to have this forum to explore suggestions.

M1

I would encourage you to do the trial. If it works, the improvements can be dramatic. Craniosacral massage is not a proven therapy and is likely BS, honestly. If the trial doesn’t work, you have your answer.

Anonymousjpl123

Hi @Linda Iltis the spinal drain trial was so (relatively) easy. By far the hardest part was getting my mom, who is 83, to go. She reported no pain throughout the procedure, and we were in very early but out by around 3 pm. Did they say why they would need 5 days for the procedure? It seems like a lot - my mom asked go out to lunch after!

I doubt craniosacral will help (though I do enjoy it as massage). The key is really how far advanced your husband is. I think the shunt helps the very most when it is caught very early.

My mom didnt have the surgery and while I am sad - we will never know what change it would have produced - she was more advanced in her cognitive decline. They have now diagnosed her with alzhwimers as well. What I think the shunt would have helped a great deal with is her incontinence and mobility, both of which have gotten worse. But that said, it does require a lot of maintenance so you will both have to be up for that.

I cannot speak to living with the shunt, but the lumbar puncture/drain test was relatively painless for my mom.