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.

inquiring minds would like to know what subsequent effects the dye used in MRI brain scans may have on people taking these exams?
Can MRI brain scans be done without use of dyes & produce useful data?
any studies out there?

REPLY
@amandajro

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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Thank you for responding. Should have my results in a couple weeks..

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Our experience is that there are many NPH patients who do not respond to tap tests, they need a longer drainage. Therefore, a protocol with infusion tests with a longer drainage can help. In total, the test takes one hour. Additional options for long-term drainage (3 days) are so-called. ELD, extended lumbar drainage.

REPLY
@amandajro

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?

Jump to this post

I heard back from my neurologist, and he said "the testing was negative for normal pressure hydrocephalus, suggesting she would not benefit from a shunt. She should follow-up with your primary care physician." I was told the mri showed nph. By not benefitting from a shunt dismiss the diagnosis of nph? Thank you for any help.

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I had an MRI without dye. Is that alright in determining if I have NPH or do you need dye to be accurate.

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@gll

I heard back from my neurologist, and he said "the testing was negative for normal pressure hydrocephalus, suggesting she would not benefit from a shunt. She should follow-up with your primary care physician." I was told the mri showed nph. By not benefitting from a shunt dismiss the diagnosis of nph? Thank you for any help.

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Following

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@likceld47

Our experience is that there are many NPH patients who do not respond to tap tests, they need a longer drainage. Therefore, a protocol with infusion tests with a longer drainage can help. In total, the test takes one hour. Additional options for long-term drainage (3 days) are so-called. ELD, extended lumbar drainage.

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And there is now a study from June 2024 that speaks to the LP (tap test) not really being conclusive enough. My 83 year old dad diagnosed with NPH just did the LP and didn't really have much improvement. Wish I would have known about the ELD...it wasn't given as an option. I'm not allowed to post links as a new user, but you can find the study at pubmed.ncbi.nlm.nih.gov/38438818/

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i have hydrosephalus and have a shunt the doctors have been chasing the settings in shunt and after 2 years maybe they have the correct setting. hope so cuz trips to rochester take time and wear me down, i am soon to be 82 yrs.
i guess i have nph what that means i dont know

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@johns92118

i have hydrosephalus and have a shunt the doctors have been chasing the settings in shunt and after 2 years maybe they have the correct setting. hope so cuz trips to rochester take time and wear me down, i am soon to be 82 yrs.
i guess i have nph what that means i dont know

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I am a 63 year old male with balance/gait problems, headaches and tinnitis. Several brain lesions on mri but no clear diagnosis, maybe ischemic strokes they said. Neurologist seemed set it was normal pressure hydrocephelous and scheduled LP. My physio and chiro noticed my eyes did not seem to track correctly. Turns out I had vestibular ocular signal mismatch likely from the areas of ischemic changes in the brain (likely caused by concussions in past sports). My balance and headaches are 85% improved feom simply wearing eyeglasses with corrective prism lenses and doing daily ocular reflex exercises. Sometimes symptoms have unthought of origins. Glad I tried the simple approach. It is life changing.

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