What's the latest normal pressure hydrocephalus (NPH) research?

Posted by awilst @awilst, Feb 22, 2021

I am interested in info about NPH , normal pressure hydrocephalus From what I read on web, the diagnosis is is based on certain general symptoms (gait/balance/brain fog etc) , & mri reading. From what I can tell , they tap your spinal fluid, potentially lower pressure, & observe if it reduces symptoms.

My questions concern the amount of research & understanding at the molecular level of what's going on. Is or has anyone got a handle (or currently looking at) what the cellular/protein activities causing hydrocephalus are? Is surgery/shunts the only approach?

I have a hearing problem & my reading tells me there are many studies going on to correct hearing loss thru neuro cellular protein solutions.

Seems the same approach should be happening with NPH.
So, my question is who, & where might that kind of research be going on, & where might I find info about it on web.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

@awilst hello and thank you for your questions on NPH to see if other members have information they can share on the research aspect you are seeking.

You will notice that I updated the title of your post to include "research" to allow for more members to join this conversation. Member @catharbert may have some more to share with you.

In the meantime, I'd like to share the following resources in case you haven't found them already in your search:

-"The Adult Hydrocephalus Clinical Research Network (AHCRN) is a network of hospitals that conduct clinical research on hydrocephalus to improve treatment for the adult forms of hydrocephalus, including transitional patients who were diagnosed as children, those who acquire hydrocephalus as adults, and patients with normal pressure hydrocephalus."
http://www.ahcrn.org
-Sharing Mayo Clinic – Two Neurosurgeries Drive Dramatic Recovery: https://sharing.mayoclinic.org/2018/09/26/two-neurosurgeries-drive-dramatic-recovery/

Can I ask if you suffer from NPH or someone close to you?

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wife has symptomsthat she may have it. she is exhibiting several issues that may indicate condition.
she had an MRi that suggested NPH.
she also has had 2 previous prior MRIs, that did not show any indication of NPH.
I would think that this MRI data (before & after??) may provide very useful research material to someone who is
looking at NPH. development.
So if you know of any researchers who might be interested in taking a look. I would appreciate the info. Or have them email me.
thanks for reply

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Hello @awilst. What are the symptoms your wife is exhibiting and what is she being treated for/with currently that may help others provide more support?

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currently , with covid 19 problem, she is not seeing anybody. she has been trying to avoid contact until she gets the vaccine (which she finally got recently).
so, she is living with :
1. MRI that says she has NPH
2. symptoms , memory loss (she is 85 ys old) so could be normal age decline, walking balance problems, other potential cognitive issues

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who is doing research in NPH? by that I mean who is doing (non shunt ) research into the possible causes of this condition? are there any groups in usa that are looking at the cellular changes within neuro system that may be causing this condition to develop? For instance , we all know that before one gets an MRI, you get an die injection , so that the image is clearer. could the die be causing any problems??? what actually goes on in the neural system when it interacts with the die???

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when I returned from the NIH, my Google searches took me to Normal Pressure Hyrdrocephalus due to discussions I took part in regarding "what is acqueduct stenosis". Turns out I don't have NPH, but it was interesting to listen to the researches regarding that at Mayo and the NIH. I find that reading PubMed is useful to know who researches what, here's a link to a pubmed at the National Library of Medicine. https://pubmed.ncbi.nlm.nih.gov/27042909/

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I am a 70 year old female and I have just been diagnosed. I can't find a lot with written on this subject. I just finished with a visit with pt, lumbar tap, and pt. I did not notice any difference in my gait after. I am still waiting for all the test ordered to come back of my spinal fluid. What can I expect if they do not put a shunt in?

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I met with a neuro physical therapist before and then after my tap. I did not notice any difference how I felt. But now 3 days later I do feel a difference in my gait, and bladder control and foggy brain. Is it possible that it would take 3 days to feel like the tap helped? And also, can you have good and bad days with NPH? This is brand new for me. Don't know what to expect and what is in store for me. Any help would be so appreciated. Thanks

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@gll

I am a 70 year old female and I have just been diagnosed. I can't find a lot with written on this subject. I just finished with a visit with pt, lumbar tap, and pt. I did not notice any difference in my gait after. I am still waiting for all the test ordered to come back of my spinal fluid. What can I expect if they do not put a shunt in?

Jump to this post

Hello @gll and welcome to Mayo Clinic Connect. You will notice that I have moved your post into an existing discussion on Normal Pressure Hydrocephalus to allow you to connect with members such as @Erinmfs and @awilst who have been sharing about NPH.

While we wait for other members to join and respond, I wanted to share the following information that may help provide some additional information:

– Hydrocephalus:
https://www.mayoclinic.org/diseases-conditions/hydrocephalus/diagnosis-treatment/drc-20373609
When do you expect to hear back on your test results?

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@gll

I met with a neuro physical therapist before and then after my tap. I did not notice any difference how I felt. But now 3 days later I do feel a difference in my gait, and bladder control and foggy brain. Is it possible that it would take 3 days to feel like the tap helped? And also, can you have good and bad days with NPH? This is brand new for me. Don't know what to expect and what is in store for me. Any help would be so appreciated. Thanks

Jump to this post

@gll I've also moved this post of yours into this existing discussion on NPH to give members some additional details as to where you are at following your tests and spinal tap.

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