Ask the Expert - NPH Episode 2: Untreated NPH

This episode discusses the long term prognosis for individuals unable to be treated or who choose not to be treated for Normal Pressure Hydrocephalus. This Ask the Expert NPH Video Series was made possible through the generosity of our industry partner Codman, a part of Integra Lifesciences who we thank for supporting this important program!
NOTE TO VIEWER: Normal Pressure Hydrocephalus (NPH) is a form of hydrocephalus that typically impacts individuals age 55 and older and is characterized by a triad of symptoms: gait disturbance or difficulty walking, mild dementia and impaired bladder control. Tune into our other Ask the Expert series if you were diagnosed as a child or a young to middle-aged adult.

[@TamptheChamp2]

Hydrocephalus is absolutely a progressive disease. My father never had surgery. Eventually his symptoms worsened from gait disturbance, dementia, and urinary incontinence to crippling arthritis, a complete inability to walk, urinary and fecal incontinence, and severe dementia to the point he could barely talk. He also developed diabetes and had several mini strokes without knowing it. To anyone on the fence about this, have the shunt surgery! Hydrocephalus is a progressive disease if left untreated.

[@FlywheelAcademy]

Thanks for sharing! How long did all this take place? And did your father know he was suffering? How did he finally pass? Thanks again

[@TamptheChamp2]

BossZen He did know he was suffering and became very depressed. He stayed alive after being diagnosed for quite a while. He started showing symptoms in 2004, and just passed away this past March 2020. In 2011, the symptoms got so bad that he basically needed round the clock total care, which was a considerable financial drain from then until now. So, to answer your question, his severe symptoms lasted for a period of 9 years during which he didn’t get any better or worse until he passed. His initial mild to moderate symptoms took place over the first 7 years. We eventually had to purchase a mechanical lift just to be able to move him in and out of bed during the severe stage.

[@ellenheim7726]

@@FlywheelAcademy b B

[@AbhishekKumar1902]

@@TamptheChamp2 😥😥

[@lindagosling3553]

Thanks for sharing. My dad was recently diagnosed with NPH and is not a candidate for surgery (diabetes, aneurysm, etc). As well he has degenerative dementia. Not having a definitive prognosis is frustrating.

[@tarheelfans98]

Thank you. We found out Dec 2023 that my husband had enlarged ventricles suspecting NPH. He did see a neurologist who wanted a LP. In early March 2024 he had that done and 2.5hrs after the LP his walk was back to normal. A few days later he told me he did feel lighter on his feet. I was thankful he even noticed a difference. He had a shunt placed on June 12, 2024. He did have a horrible head pain but no bleed was found. About 14hrs later they got that pain under control and after 2 nights was released to go home. He did tell the neurosurgeons assistant that he already felt lighter on his feet. It’s just over a week after his surgery and things seem to be going fairly well. I assume he will need time. Time to recover. I did notice his symptoms did get a little worse from March when he had his LP to June when he had his shunt placed. We’re not positive how long he had had NPH. I suspected from 2020. A head injury that was never treated. But the neurosurgeon also mentioned burn pits overseas. And he was exposed to those on multiple different deployment while in the military. Either way, this is our new life and I appreciate the doctors who have been involved in our journey.

[@marymaki-rich558]

I started with frequent falls over a year's time and my MRI showed massive hydrocephalus. Then had a three day lumbar drain trial indicating the shunt wasn't needed. I had a second trial as well. No shunt. Three years later, my walking has deteriorated. I'm going back to my neurosurgeon and see if he thinks now is the time to do the shunt. I am hopeful that I would benefit. But I appreciate this discussion. I really notice things like my turning direction is much more difficult and also walking over uneven surfaces. It is hard to explain, but it really affects the quality of my life. I have a hard time hiking and had to give up bicycling, which was a joy.

[@dragonrescuer5128]

For those in az., check out Barrow Neurological Institute. World renowned. Ali went there for his Parkinson's.

[@sosaix3545]

@@dragonrescuer5128 great recommendation; my 80 year old mom is going to Barrow this week for a lumbar puncture test and we're hopeful she sees a noticeable improvement with the procedure and can move forward with the shunt. I'm keeping all fingers and toes crossed.

[@candycorn3287]

Waiting to find out if this is what I have I saw neurologist will get an EEG next if I need this surgery I am 100%getting it

[@amandashirley221]

Thank you for sharing. My husband is 48. Diagnosed with NPH. He had great results after LP. Shunt surgery in June. I am hopeful that this could be helpful for him.

[@carolemuenzer5490]

Best decision I made was to have the surgery. I had the NPH w NCH. I did not have a shunt put in. I had had spinal meningitis in my twenties which caused NPH showing up in my forties I had surgery to drain the fluid. my surgeon does not do the shunt. It has been two and a half yrs. I feel great and my tests are in the normal range. I had all the symptoms before surgery. It did take me three weeks in rehab. I am still improving after all this time. I am back to a normal life. I totally recommend having surgery. Thank you Dr. Casey Halprin at Stanford University Hospital

[@kerrystaffa4335]

Hello,My name Kerry from Port Orange FL.,did your spinal tap hurt a lot? And did gait improve afterwards? Thanks

[@ellenheim7726]

@@kerrystaffa4335bb b

[@susanedghill6597]

I was told That I had Parkinson’s then after the test no it must be something else then I was finally diagnosed with NPH two years ago. I started falling backwards in 2016 ..by2019 I was in a wheelchair and still not diagnosed properly it wasn’t until 2022 was diagnosed with NPH and had my Codman shunt placed .. Nowi have no short term memory along with incontinencd and gait ... I have to use a Rollator walker.. Imnow 77

[@thinblueline7323]

So what about the patient who has NPH and after lumbar puncture showed signs of improvement but told they have co-morbidities and the surgeon won’t do the surgery?

[@peachmelba9333]

It is my belief -I may have this. Spoke to my neurologist who said You were fine a year ago, no enlarged ventricle, ah but I had an MRI ordered by another Physician in their system 3 months AGO- she seems to be unwilling to pull it up. Meanwhile I am "wet" urinary incontinence worsening, "wobbly " three weeks ago I fell, cut my knee open, no preceeding dizziness, didn't mis-step, don't know # of below skin surface absorbable sutures, but 19 surface ones. As for " wacky" I've been high- functioning autie/asperghers from " little- personhood " as a Female diagnosis was denied me for YEARS- although this Wacky is more like Demetia- haven't made it THERE quite yet but Banging on Doors denied me is not helping. I'm 76, so right age group, had a Lumbar Puncture, opening pressure" 14" but release of CSF- for 36 hours afterward I was walking straighter. One gets the feeling- At Autopsy a Pathologist will say " Ah Ha, that's what was wrong with Her!" And At this point, it's a little too late to do the right thing NOW!

[@MirlaisaBartolomeimilly]

I'm 34 and had an MRI and they seen some abnormalities that seem to be this my exam showed some extra fluid they said that is early signs on things that happen to older people . I've been having random migraine attack's but I have a hunch this is the problem . my symptom's are very mild only get them once in a while and close to none at all sometimes . I feel like it all get sweep under the rug in a woman .constantly diagnosing these symptoms as anxiety and depression because most test come back normal :(

[@rosieanddarylprice6019]

I was diagnosed with NPH after I had two strokes (subarachnoid haemorrages) in 2018 from the MRI's that were conducted after those events. Apparently, I've had hydrocephalus all my life but I am asymptomatic and a shunt would not improve my quality of life. It's an unusual case, I've been told, even to survive two strokes, let alone live most of my life with undiagnosed hydrocephalus and I'm 58 now. I don't have any other symptoms other than tiredness sometimes, but the neurosurgeon was initially concerned with the amount of CSF my body was producing at my age and did a lumbar puncture. The resulting cognitive tests before and after produced exactly the same result.

[@barraqaalim7459]

How are you doing now

[@katesisco]

I also seems to have survived developing NPH probably after a childhood brain injury. Middle age I had very bad migraines for a decade, gone now. I did have a MRI, no info. Was homeless for 30 years after husband died. I have been looked at for A, P and other assignments but seem to function enough to get by. Bad colds, told by physician I have idiopathic lung fibrosis. I walk everywhere at 75. Make a home for myself and son, manage bank account, do gardening.

[@darylprice-wx7fz]

​@barraqaalim7459 thanks for asking, I notice that I posted this two years ago and don't remember doing it. Time has passed so quickly. I've had two MRI's in that time and there's been no change. I still get a pressure feeling in my head at times and still struggle with fatigue.

[@robertretired]

What about side effects for having a shunt?

[@lauriesolis1074]

My mom has NPH. She was told that side effects of having the shunt were infections and that the shunt would have to be replaced from time to time. In addition, they told her she could have the surgery, but that it was very risky for her. So basically they discouraged her and she did not have it done.

[@arthurcabral285]

Yes

[@cloggy010]

thanx great!

[@jase588]

I really need you guys help!😢❤

[@vincecarnevale4406]

Amanda looks like Diane lane

[@annathiel2593]

My mother (63) has been diagnosed with NPH as well as having a small growth in one of her ventricles. She needs to find a Neurologist in the St Louis area because she is experiencing increase in symptoms but the Neurologist in Springfield Il can't get her into his office before November. Do you have any suggestions? Thanks!

[@nicepeople2497]

Can a shunt be placed if a patient has psoriasis with hydrocephalus

[@sylviabondoc662]

i am from Texas how can i get in touch with Dr. Okolo Herbal medecine

[@peterholmes3705]

Why would a nuerosurgeon advise against a shunt?

[@LisaMonette-mz8iz]

Is there special precautions needed for oral surgery and dental work with patients with a brain shunt?

[@emfraridades7261]

What about craniectomy hydrocephalus? Can It stabilize untreated?

[@annetierney7143]

How do I get help from you. Or... is this an advertisement

[@barraqaalim7459]

I recommend you to Dr Okolo herbal medicine

[@TheLaxLuther]

Hey, my Dad has NPH - he has had a spinal fluid drained once, but saw little to no improvement, does this mean that a shunt would not help at all? does it mean that a shunt would only provide a small benefit?

[@barraqaalim7459]

I recommend you to Dr Okolo herbal medicine formula

[@johndaubner973]

What are the symptoms? And can you be born without NPH and come down with old age?

[@johndaubner973]

Rather, can you develop NPH after (years after) having had a shunt installed?

[@dragonrescuer5128]

Yes, you can develop nph later in life. I have nph, and had obstructive hydrocephalus, too.

[@johndaubner973]

@@dragonrescuer5128 Thanks

[@barraqaalim7459]

I recommend everyone to Dr Okolo who can cure any type of diseases With his herbal medicine formula

[@annetierney7143]

A person 42 yers old. Not 4

[@annetierney7143]

Some one who is 4/ years old