Normal Pressure Hydrocephalus | Patricia's Story

[trashbug]

My grandfather's mobility had been deterioring for the last 5 years and he was finally diagnosed with NPH after a lot of runaround with misdiagnosis and heartache from seeing him suffer.
He was barely able to control his speed and could only shuffle. He could no longer make it up and down the ten or so front porch steps. He avoided driving. His bladder was starting to be affected but thankfully he was not suffering too much from the mental symptoms of NPH.
Last week he had the shunt surgery and his gait is already markedly improved. He went to church for the first time in months, if not a year. His quality of life is already so much better after just a week.
It's all uphill from here. Don't give up hope. Get second, third, fourth opinions if you have to. It can get better.

[Fcycfvyvvyvtfutg]

Bless the one doctor who took her seriously.

[NymNym-hslh]

My father was diagnosed with this and we went through so much trying to get someone to listen. It’s amazing to me (I was a nurse) how much the medical community won’t listen to patients or their family. They constantly try to use dementia an umbrella diagnosis that holds the elderly back and down. That’s wrong. I am ecstatic that my father has a better primary physician that the neurologist she was referred to. The neurologist would not listen. He just wrote down whatever and went on to the next patient. This was in Oklahoma. We are going for a follow up and to get a better neurologist. We could use prayers on this that we actually get one that listens after 5 years of the run a round.

[pegbutwin]

My 73 yo mom was just diagnosed with this. It’s been a very eye opening experience. The incontinence, dementia-like symptoms, etc.

[GABSTA]

Richard thank you for being her voice. 40 years of knowing someone and daily living with them. Hope all is going okay now xx vp shunt here

[paulvasterling]

25 years ago my mother was diagnosed for Parkinson's and treated for that for 5 years until her Neurologists recognized that no level of eldopa seemed to make any difference. She received the shunt and a day later was cured.

[MrsShocoTaco]

You learn to appreciate every moment you're not in serious pain. It happens so little

[JMDY]

Had this since 6 weeks old. I’m 26 & had my shunt changed due to blockages twice (7 & 11) and no real issues since. It’s interesting since my doctors don’t know a lot about this

[alison]

Thank you for sharing your experience - it has given me so much hope.x

[MrTiggerr]

I was diagnosed with NPH in October 2018 this was something that I actually started developing symptoms back in the year 2000 initially thinking I had early onset Parkinson's....Just waiting for my surgery date to go to have the shunt installed I've had two lumbar punctures so far and concluded I have NPH.

[anithaga]

My 68 year old
mom has been going through these symptoms and 2 neurologists said that this was depression and because of the uti that she was getting. finally she was almost going to a comatose stage and then one doctor diagnosed this. They are deciding on whether to put the shunt or not

[TinthiaClemant]

I have been searching for someone to help me for over five years. Doctors kept telling me to relax.

[Liv]

Aww bless her my heart truly goes out to this lovely woman praying for her as I am a hydrocephalus survivor and have the condition🥲🙏🏻🤗

[katesisco]

At 75, NPH explains my migraine period, wobbly walk, and urinary urges. My herbals and walking seems to be behind my improvement.

[ltaml]

thank you for I think my brother has nph, he can't walk at all now it has gotten so bad. But his wife was told he would have a headache if he had hydrocephalus, so he doesn't have I'm so sad and frustrated. He has enlarged ventricals, but the said MRI was the same over 3 months. Still enlarged, but not larger.... St Cloud, MN

[believing]

You would need an MRI to determine things first and then they'll check your cerebrospinal fluid. Find a neurologist. Good luck.

[excellinkus]

You have a good chance of being misdiagnosed, especially your doctor finished at the bottom half of his class and refers you to a neurologist who vastly overestimates his competence and keeps saying "come back in a year." In that case, you have to become your own advocate and do your own research. I presented my diagnosis of NPH to my current neurologist and kept pushing to see a neurosurgeon. I finally was diagnosed with NPH, which I had suspected for about a year, and got scheduled for surgery. The whole thing took about 7 years. Even when I could barely walk, both my doctor and neurologist were stumped. It was only when I got a second opinion from my original neurologist (whom my doctor incorrectly thought had retired) that I got to see the neurosurgeon. It's always a good idea to get a second opinion!!!

[gg-sjyb]

Doctor, I am from India and my mommy has been on the treatment after ETV.

[karenharris]

My husband smoked cigarettes for forty years and totally hosed his heart. Finally got dx'd with Hydrocephalus, but he was in such bad shape by then they couldn't do anything for him. I'm still not dealing with being a widow!

[GeckoHiker]

After pursuing answers and medical help for over two years, we've come to the realization that it is too late for surgery for my cousin. She has NPH and has probably had it most of her adult life. I'm now her guardian and fulltime caretaker, thanks to COVID-19. She had all the classic symptons, frequent falls, unexplained incontinence, and a short-term memory deficit that has taken away all executive function. She literally lives in the moment. She is lucid and articulate in the moment, but doesn't remember the moments. Because of the level of brain damage detected several neurosurgeons that we've consulted do not believe relieving the pressure now will have any positive affect and she'd have a hard time with the aftermath.