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

@spibill, @coloradomama, and all... I will have a brain MRI Thursday, 1/30/25, ordered by my Rheumatologist. Thankfully. Yesterday, I reached a point with new symptoms that I realized must be diagnosed. I have all the symptoms, it seems, of Normal Pressure Hydrocepholus... These symptoms occurred the last several months every morning as awaking with difficulty from a nightmare, with incontinence on sitting up in bed, severe foggy brain, no balance, hold onto wall to shuffle to bathroom. Can not pick up feet! Feel like magnets on bottom.

I don't recognize myself in the mirror... my lower lip is enlarged and hanging, my entire face, both sides, is hanging with the muscles all drooping toward my chin. I look frightening, both sides.

In the past it took hours to recover, slowly. And, nightmares increased in frequency, these symptoms increased in severity. Yesterday I spent the day at Mayo from 11 blood-work, CT scan and a vasculitis surgeon visit, with no changes so all is fine there.

But, it was a tough day. Getting dressed was tough. Thinking was tough. Moving was tough. I was still shuffling, although less, on getting home and went to bed at 5:30. The last several weeks, I've become more apathetic, more irritable, having problems getting anything done and completed, forgetting... cognitive issues. New. I am usually very clear, clarity of thought, forget little and interested in my limited life. Going downhill gradually, but not associating any of my issues with these.

I have a brain MRI scheduled this Thursday. Thank the good Lord. I think I am a classic NPH patient. We'll see with these test results. I'm very concerned. I'm a 78 year old woman, with several autoimmune illnesses, multiple diseases I accept and deal with daily, vasculitis/PMR/Sarcoid/GCA. Take Prednisone now daily with weekly Methotrexate. I thought these things were boxed in and blood-work shows no activity currently. I have heart disease, 4.9 ascending thoracic aneurysm, and more, but am staying fairly stable until the last several months.

I 2024 I had 5 serious UTI with 3 hospital stays for IV antibiotic infusions. So, my body has been under attack for the last year and these new brain symptoms sneaked up on me! Pooh! Don't like or want this added to my list!

But, I'll deal with it. I'm asking you folks for advice and any suggestions you may have for NPH. I am surely not a candidate for surgery. Have any of you had success with regular spinal fluid reductions, taps as needed when symptoms increase? Is there any other treatment available? Your suggestions for improving symptoms... cognitive decline? I live alone, have a disabled 56 year old son whom I help as I can. He thankfully helps me as well now, but he's deteriorating as well...

Thank you for your suggestions to help me as I join you in this crazy walk... Elizabeth

@colleenyoung, @johnbishop, and others... I'm sending this post your way for any insights you have, and to guide me to the proper sites. I have a bunch of learning here and am caught off guard although I knew something wasn't right and I was deteriorating as weeks went by...
Thanks for any help.
Elizabeth

Hi Elizabeth @ess77, I'm sorry to hear you have even more on your plate to try and manage. I don't know much about NPH but I did find some information on the Hydrocephalus Association site that might help you learn more about the condition if that's what you have for a diagnosis - You or Your Loved One Has Just Been Diagnosed – What’s Next?: https://www.hydroassoc.org/whats-next-newly-diagnosed/.

Hoping your MRI helps guide your care team and gives you some answers.

@johnbishop, and all... Thank you. It appears this is indeed the diagnosis, the MRI may be simply confirming and giving wonderful information we need. Naturally, I'm concerned. And, especially concerned re treatment options for me with my comorbidities and age. That discussion is upmost in my mind presently.

Checking the link now...
Blessings, ess

@johnbishop, and all... John, it appears I have vertebrobasilar disease, left vertebral artery going to the basilar artery... cerebral arteriosclerosis. Yucky yuck! May be cause of dizziness, falling, dropping things more with right hand, right head/neck/shoulder/arm pain, double vision, blurred vision, and whatever else we can conjour. Don't know about worsening symptoms of weakness, magnets holding my feet down, drooping muscles on both sides of face all after lyind down on my back. Referred to vascular neurology, sinus for infection noted, CT scan for vascular head info, etc. I suppose we're looking at a stroke somewhere in my future. I'll find out when I visit the neurologist and move on from there. I really want the new symptoms dealt with to stop with the shuffling and droopy face and falling. That's not a good way to start every day and they are increasing. So, here we go again! One more thing...

I suppose acceptance is in order as I find out more info. It's time for deep thinking about my son's future as he's getting worse as well. We have some discussions to have if there's ever a time he's able. Hmmm....

Well, thanks, John. You are a good soul. Blessings, ess

i have hydrosephalus and didnt know it i couldnt walk, sort of shuffled. got an appointment with neurologist ay mayo and after a ouple months testing they said i had hydrosephalus and needed a shunt..they put one in and after a period og trial and error fount the ccorrect setting for shunt. now i think i am to go in every yesr to check it. so far so good. (fingers crossed). i hope you get good results.

@johns92118 and all... Hello. I'm so sorry you are dealing with this stuff. It's really distressing isn't it? I have the shuffling in the morning, but my walking improves as the day goes on. Headaches, neck and shoulder and arm nerve issues with weakness and pain most of the time. The brain MRI at Mayo did not indicate Hydrocephalus, but does show vertebrobasilar disease, the left vertebral artery that feeds the left side of the brain into the base of the brain and all the stuff that's there, including perhaps the nerves leading into the right arm. So, this may be the cause of the nerve and right sided issues. Don't know for sure. No definitive hydrocephalus at this point.

I'm seeing a vascular neurologist soon, having a CT brain scan first, and hopefully getting answers and some treatment. I currently find cold cloths, ice packs give me good relief from headaches, nerve issues from the shoulder up the neck to the head... Also on the arm...We'll see what the doc and pictures say.

I am tired of all this mess, actually. I am just tired of it. It's a fight to get through the day some days as I have other things going on also. I accept where I am in this life of mine, just had my 78th birthday yesterday for which I am so grateful! But, I'm tired!

You are blessed to have your diagnosis and the shunt which seems to help. I don't think I qualify for any surgery at this stage, so I hope to have some treatment options.

Blessings as you walk this crazy journey! elizabeth