NPH / Normal Pressure Hydrocephalus

QuincyLF

I've searched the boards and don't see a clear cut answer on this one.  Does anyone have a LO diagnosed with ALZ and later on, NPH?  My dad is 72, started developing ALZ symptoms about 5 years ago.  Currently stage 6.  This week, a CAT scan revealed significant fluid on his brain (NPH).  Characterized by odd gait (check), lose of bowel control (check), dementia symptoms (check).  Neurosurgeon is performing a spinal tap to drain the fluid and see if it improves at all.

Has anyone gone through a similar journey?  Did it work in helping at least some of the symptoms of ALZ (and gait, continence, etc)?  Did it not work?

I don't want to get my hopes up - but we are willing to try anything.  I am utterly disappointed his main neurologist didn't check into this when I told them in Oct he lost control of his bowels.  They just said "it's stage 6b".  No additional CAT scan was ordered. 

Any insight - would be awesome.

harshedbuzz

Normal Pressure Hydrocephalus (NPH) | Symptoms & Treatments | alz.org


According to this, treatment might improve the gait somewhat. Cognition and continence, not so much. Most everything I read on NPH implicates loss of bladder-- not bowel-- control. 

HB

QuincyLF

Thanks for sharing the link.  I have read tons of articles on NPH.  Hopeful someone has 1st or 2nd hand experience with the diagnosis - tied to ALZ and if their LO actually had the drain performed.  What was the outcome.

Iris L.

Agent 99, an emeritus member, posted beginning in 2013 about her DH with normal pressure hydrocephalus. You can do searches for other threads regarding NPH, if you go to the main Caregiver page and use the Search tab on the dashboard.

Iris L.

Sleepless in Sleep

I too saw this on a recent CT scan and nothing was pointed out to me. I assumed it was normal for late stage 6 to stage 7.

I too will be looking into this, OST.

BassetHoundAnn

My mom was diagnosed with this about a year ago. She's 96 in stage 6e of Alzheimer's. I didn't think that considering her age treatment would be a good option. I'll be interested in hearing how effective treatment is for your dad. One of my concerns was that fluid would reaccumulate after draining since it isn't known why fluid accumulates in the first place. 

She's had so many CT scans for falls in the past few years, but suddenly the hydrocephalus just popped up on one of the scans. Did she have it for years, and was it missed? I really wondered. The draining would have been an option for her years ago. 

The best of luck to you and your dad! Please tells us how it goes. 

QuincyLF

I'll definitely keep this thread updated.  Dad is getting the procedure done Monday (07/11/2022).  The way it works is - they first drain the excess fluid via spinal tap.  They monitor him for 24-48 hours and see if there is any sort of improvement in symptoms (ie - will he walk normal - right now he takes short shuffle steps, will he regain control of his incontinence (both urinary and bowel) - will it improve anything else.  Per what I am told by the neurosurgeon as well as a wealth of information on the web - it's pretty much immediate.  If they see improvement (mainly in gait) - that means it worked - and they will permanently install a 'shunt' - to keep it drained properly.  It'll need to be maintained & changed every few years - but my dad is a young 72.  We will try!

Will be back next week with more updates!

Sleepless in Sleep

Hi Quincy,

Really looking forward to hearing the results. I hope it was positive.

I mentioned the NPH finding to the General Practitioner and they added it to the diagnosis, but said we are to the point where surgery is not an option anyway.

Thanks!

QuincyLF

Hi Sleepless in Sleep.  The spinal tap procedure went smooth.  They had to sedate my dad (to minimize squirming while the needle went in) - but he was just fine otherwise.  They drained quite a bit of fluid from his brain and determined he is a candidate for a more permanent shunt.  He is walking a bit better.  He had no negative side effects whatsoever.  We go back in 3 weeks for a follow-up and more in-depth discussion of the shunt implant.  We are proceeding unless the neurosurgeon determines it's too risky.

With dad's age (72), overall health, amount of fluid build-up drained - having the procedure looks hopeful.

Signed, 

Hopeful!

BassetHoundAnn

Hello, Quincy, 

Thank you for the update. So glad your dad got through it well and appears to be improving. Hopefully more improvements will come. The best to both of you!

QuincyLF

Dad had the permanent (adjustable) shunt installed 2 days ago (9/28/2022).  Surgery went smooth.  I'll keep this feed updated with progress as time goes by.  Docs say it isn't immediate - but mini-improvements.  We shall see.  So far, 2 days in, no adverse reactions.  I really hope it stays that way - and minimally his walking improves.  Fingers crossed!

Interested to hear if anyone else's LO had a shunt implant recently and how it's going so far for them?

mommyandme (m&m)

Thank you for your updates. Glad things are going alright so far.

ICalE

@QuincyLF Any updates?

A neurologist suggested, excitedly, the same about my Mom after a brain MRI. She thought she had the three classic symptoms of NPH too: magnetic gait, urinary incontinence, cognitive issues.

It's true that the incontinence and walking got difficult after she fractured her hip 6 months ago, but it's also around when she started Risperidone which itself may be causing some of this.

The cognitive decline started four years ago from what I can tell, and she had been shuffling her feet (not able to pick them up completely off the floor) for at least two years before the fractured hip.

To top it off she is 84 and has heart failure. She is currently in the hospital with a blood clot in her lung and in her leg (treatable with blood thinners). She is extremely agitated usually insisting they're trying to kill her, that they are burning the hospital down, and at the same time that she is doing fine. And asking about the dog who died about 20 years ago.

My Mom moved to an ALF about 6 weeks ago. I will have to sell her house of 50 years (so much history) within the next 6-8 months to fund her long-term care. It really, really kills me to do that. I am holding out hope that she can be treated - that it really is all just NPH.

Please update.

QuincyLF

So, we were advised if it's NPH and Alzheimer's - it's hard to determine if the shunt will help. We took a chance. He had plenty of fluid on the brain - we installed the shunt. No adverse issues to date (knock on wood). But his ALZ is progressing as one would assume. A month ago he became wheelchair bound.

So, it's hard to tell if it will help. It will help remove the fluid - but each patient is different.

My advice? Just get a 2nd opinion and also fill in your mom's neurologist to weigh in.