Ask the Expert - NPH Episode 1: Dementia or NPH?

Five neurologists told me I was nervous and too relax. I was even prescribed anti anxiety medication. I finally found one who performed a spinal tap and gave me a diagnosis of NPH. He sent me to a neurosurgeon who told me 64 was too old for a shunt. Said for me to come back when I was in a wheelchair. Now at 67 I’m in a wheelchair. ❤

Thanks for another great, informative video. What wasn’t mentioned in the discussion is that the longer you wait to place the shunt the less likely you are to regain full function. I understand the need to rule out other diagnosis before brain surgery that’s protecting your patient. Waiting for the disease process to progress is withholding available treatment, intentionally allowing suffering and harm to come to your patient. If the scans show hydrocephalus and the patients life is altered due to any or all of the known associated symptoms you are morally obliged to offer treatment at that time. Practitioners routinely underestimate and dismiss the impact that NPH and SHYMA have on the patient and their family. I assure you it is physically, emotionally, financially and spiritually life altering for all involved. I’m not exaggerating when I say living with SHYMA or NPH is NOT living!! You are a shell of a person stuck in a body that is neither dead nor truly alive. Intentionally prolonging that is a form of torture, period! I’d much rather die in the OR and go be in peace.

Encourage her to have the surgery. I have come back to life since my surgery. I had all the symptoms of dementia but it was NCH. Get an MRI get the surgery done. I am 67 and I looked so old because of it now I look great and I’ve started back with a Personal trainer I had therapy at the hospital for three weeks. Then out patient therapy reclaim your life.

Thank you SOOOOOOO much for sharing this! We are in the middle of this frustrating process, and this information was incredibly helpful to hear, especially regarding the timing.

Thank you so much for such an informative discussion with the doctors 🙏

My mom was diagnosed with NPH this year after six years of thinking it was vascular dementia . Doctor placed a VP Shunt right away this July. Physically she is 💯 better but her memory still very bad . We still have hope her memory will improve.

very good! thanx!

A wonderful internist diagnosed NPH and I now after many months and shunt surgery I am doing very very well!

Video was very informative and helpful.

Another note to spacey Casey before my brain surgery I was as weird as your mom sounds. I had every excuse for my actions and in my normal mind now I was just “crasy”. Best of luck

Great information here - the first time I've heard about a spinal tap being used as a diagnostic tool for NPH. I've been seeing a neurosurgeon for several years, had a few MRI scans, and he's seen the enlarged ventricles in my brain since 2013. At that time I was asymptomatic. A couple of years ago he finally advanced the theory that it could be NPH. But so far nothing has been done. Meanwhile my left leg has grown weak to the point where I have to walk with a cane, the need to urinate is now urgent, and I'm becoming forgetful. And I've had to retire. I will bring up the spinal tap with my doctor on my next visit. But so far there is no diagnosis, or any recommended treatment such as a spinal tap or shunt implant. Hard to believe that a specialist can be so dismissive and waste so much time.

This was so informative. I can't wait to watch the other episodes. I too have spent a year and a half trying to figure out why my memory has recently gotten much worse, my eyesight has gotten to where I see double and triple vision. My gait is where I am losing my balance and (lol) I tend to veer to the right. I now have two doctors at Johns Hopkins from two different departments discussing whether I have dementia or Hydrocephalus. It's good to know that others have found support and solutions.

I had been complaining about dizziness, vertigo and bladder issues for years. Saw a neurologist but got nowhere. A few months later I tripped dislocating and cracking my shoulder. After the hospital I saw a neurologist a few days later I fell again and broke my shoulder requiring surgery. While in the hospital I got referred to a neurosurgeon. He ordered the mri that finally got my hydrocephalus diagnosis and quickly received a shunt. My brain was nearly invisible there was so much fluid. I haven't had a bad fall since getting a shunt but need a walker to get around. Since a few months after getting shunted I've received zero care as far as my shunt goes. It's very frustrating that I can't seem to find any follow up care. I don't know what to do.

Hi all, Thank you for these "ask the expert" videos.... very helpful. I just had a 3 day external lumbar drain test. I showed improvement on cog test, the gait test and my urinary urgency issues disappeared almost immediately. Overall I'm feeling SOOO much better. Unsure if it is enough for a shunt operation approval..... tbd Does anyone know how long these improvements will last once now that the test is over? Might I get a few more days of feeling somewhat normal? ty

Thank you for a very informative video. DO you see people who get diagnosed with NPH, that the gait disturbances, cognitive dimensions and balance is worse when they get up in the morning and it slowly improves (does not return to normal) over the course of the day? Thank you.

My mother is 66 with advanced nph. She was diagnosed in 1989 but refused to go back to the neurologist (he insulted her, she said). My sister and I found out recently. You can imagine our horror at this discovery as she has had balance, incontinence, and memory/social issues for the last two decades. There was always something else she and family doc had to blame the symptoms on: bad feet, low bladder, psych meds.. We found out her family doctors and a family member knew, but no one urged her to go find another neurologist. We took her for mri, lumbar test, and the neurosurgeon determined she was beyond any help neurologically, period. I vomited when I saw her mri, it was horrible, from what I know of brain structure and such. If anyone knows anything about any studies, help, anything, please reply. Or if you want to use her story and images for education purposes or to give words of advice I will share them. She is still up and at it, but falling more. She has had early dementia symptoms for several years now but memory deterioration seems to be relatively slow. I beg for any words of advice/council. Than you

Could a NPH misdiagosis of epilepsy be possible? And could an MRI scan adversely affect an existing shunt (Codman's)

They do not talk about the complications of spinal tap or placing a shunt. My mom is 89 years old and am wondering if it is worth for her going through all of that when statistics show that it does not improve memory. She has a walker which helps her walk.

I’ve had headaches since the shunt placement, they vary from slight to intense but the feeling is always there. It’s going on 3 weeks. This week the headaches have lessened but my eyesight is shaky and I feel lightheaded with my eyes open. Closing them is the only relief. My question is: is this normal and how long will it last?

My baby has been diagnosed with hydrocephalus & has been delivered prematured (25 days before delivery date). Is being treated using Omaya with daily taping requirement. Since last 16 days there is no requirement of taping. ..no bulging in anterior fontenell...What can we conclude... require your suggestion Regards