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. ❤

@KiKiQuiQuiKiKi

5 ай бұрын

Malpractice! My obese, terribly unhealthy loved one had the shunts installed at 75.

@TinthiaClemant

5 ай бұрын

@@KiKiQuiQuiKiKi it’s so hard finding a Doctor Who will listen to me instead of saying oh you need a psychiatrist.

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.

@cathilehman-buschmeier5858

3 жыл бұрын

I am going through this my mom. It is diificult at best. Hope all is well.

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.

@markjohnston1648

3 жыл бұрын

Well said and very true re the impact that NPH can have on your quality of life. VP shunt surgery has given me my life back.

@lindaowens65

2 жыл бұрын

Amen

@capresti3537

Жыл бұрын

No one should proceed with surgery without a lumbar puncture. Only a lumbar puncture would confirm if a shunt would be beneficial. Shunt surgery does come with dangerous risks and not all patients respond, in fact most do not.

@KiKiQuiQuiKiKi

5 ай бұрын

I totally agree.

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.

@ap-be2it

4 жыл бұрын

Hi My husband has Hydrocephalus I was told about the surgery I was going to allow Dr to do it but then I was told that it may not work and he would lose his life since he has type 2diabetes I want him better I believe in the power of prayer and Miracles what can I do. I live in New jersey he is 65 God Bless you and yes he has signs of dementia. question is the tube painful? Thank you

@carolemuenzer5490

4 жыл бұрын

Alice Perez loved my doctor, but they all seem so young anymore. He did a Third Ventriculostomy to drain the fluid off my brain. I was very responsive after surgery. Then the lights went out again for a couple of days, due to the swelling. I had it done at Stanford hospital and rehabbed for three weeks at Good Samaritan out patient therapy. I am close to being one hundred percent my old self. My short term memory is really improved, but if I get overtired I have a hard time thinking. I do not have a shunt just had temporary drainage tube for day after surgery also very small incision, just have a slight divot on my head. Dr was Dr. Casey Halprin at Stanford Hospital in Palto Alto, California I totally got my life back. It was a form of dementia but it was treatable. I praise God I got my life back. Good luck to you

@carolemuenzer5490

4 жыл бұрын

Alice Perez sorry I don’t know how diabetes affects your brain. I do know though when I was at my worst I did want to die. I reminded the Lord that he had healed King Nebuchadnezzar I believed he could heal me. He did

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

very good! thanx!

Video was very informative and helpful.

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.

@OptiVida

3 жыл бұрын

omg! So happy for you! I am feeling so hopeful right now - I just came across this last night

@moseyoung4573

3 жыл бұрын

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@aliboy123

2 жыл бұрын

My dad is getting his VP shunt today. I pray for the same results your mom had.

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

@carolinereid2527

7 ай бұрын

I was evaluated by neurologists at a major university hospital. I am walking and doing so so well and it is all due to perfect medical care.

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

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.

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

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

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

@m.t.r.168

4 жыл бұрын

I am so sorry for your mom and your family. My mother had NPH but it was misdiagnosed as allergies at first then Parkinson's so she was treated with allergy shots for years then Parkinson's medicine and did not receive the surgery for a long while. She was not able to lift her feet and was falling, very exhausted, weak and confused. Even though there was a delay of many years, her improvement after surgery was amazing. It gave her back her life. She felt so good she wanted to dance the Charleston on the escalator going up to the doctor's office for her post-surgery check-up! I know the surgery cannot help everyone, and I don't mean to get anyone's hope up unrealistically, but I would not assume the shunt surgery won't help just because of the long delay in getting help. Hang in there and good luck to your mother.

@stoit87

2 жыл бұрын

@@m.t.r.168 That is amazing and inspiring ! I am a candidate for the VP shunt surgery at age 56 however I am being told that it will help me and I do not have NPH. I had an LP shunt placed 7 months ago that hasn't shown any improvement at all with symptoms of severe gait and drop foot, urinary incontinence and head fog all that came about after a brain hemorrhage in 2015 and developed arachnoid cysts and now my neurosurgeon wants to do the VP shunt. I am holding out for the miracle your Mom received which again is so inspiring. This most likely will be my last shot at getting my life back or living out what's left of time disabled and miserable.

@m.t.r.168

2 жыл бұрын

@@stoit87 I am so sorry for all that you are enduring. My heart goes out to you. I hope that you find a solution!!

@stoit87

2 жыл бұрын

@@m.t.r.168 Thank you so much.

@capresti3537

Жыл бұрын

Psychiatric drugs cause all those symptoms if she takes them.

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.

@HydroAssoc

9 ай бұрын

Hi @duane2344, we are glad you found our videos informative! We are hosting a virtual conference November 3-5, 2023 and we will have sessions specific for NPH. You can find more information here: hydrocephalusconference.org/

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?

Dr. Does someone with NPH goes true convulsion please

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.

@stoit87

2 жыл бұрын

Correction: "NOT" at all hard to believe. It's easy to waste years with so called doctors.

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.

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

My cousin just turned 70. She has a diagnosis of NPH, with the triad of symptoms, but the neurosurgeon declined to intervene. I believe she's had it since her late 40s, because that was the point when she lost her executive function. This is based on friends' observations and inability to hold down a job. She lives entirely in the moment. I'm now her guardian and fulltime caretaker. She can eat and use the bathroom, but cannot bathe or do much else anymore. She can watch television and tries to knit. She remembers past events and people with no problem, but can't remember that we spent her birthday at her sister's house a month ago. In conversation, it is immediately repetitive with the same question being asked within seconds of receiving an answer. There is no indication that she forms short term memories, at all. She does remember people that she likes, introduced within the past year, but can't remember interactions with them. A year ago, she could go on long walks in a big city but would often be brought home by someone who observed a bad fall. Hence the family intervention and appointment of co-guardians. I would love to get the shunt for her if there were any possibility she could see any little bit of improvement. She's lost her life to this condition.

@kishamunson1739

3 жыл бұрын

I'm so sorry you and your cousin are going through this. I did watch a video of a man who swore he just had dementia for FIFTEEN YEARS. He just kept getting misdiagnosed. Later on, the walking and incontinence appeared. He ended up getting a shunt, and has his life back. I think he had to do some physical and occupation therapy for a few weeks, but that's it. So I believe there is hope for her.

@barraqaalim7459

3 жыл бұрын

Dr Okolo herbal medicine formula order it nd be free from NPH

@capresti3537

Жыл бұрын

NPH does not occur in people in their 40's. This is a very rare condition that happens only some elderly people. I doubt she has this condition.

@GeckoHiker

Жыл бұрын

@@capresti3537 In a study from the United States, about 14% of elderly people in nursing homes suffer from the progressive neurological disorder idiopathic normal pressure hydrocephalus (iNPH) with the cardinal symptoms of gait impairment, cognitive decline and urinary incontinence [2].May 29, 2019

@capresti3537

Жыл бұрын

@@GeckoHiker 14% is quite low, it's a rare condition.

My mother is in the middle of hydrocephalus diagnosing. We are confusing between brain atrophy vs hydrocephalus! How can we differentiate between the two?

@barraqaalim7459

2 жыл бұрын

How is she doing now

My husband was diagnosed with Alzheimer's 7 years ago and now the neuro-surgeon thinks it's hydrocephalus. He can't have surgery because of the covid patients that refuse to get their shots and are packing the hospitals. It's more than frustrating.

@duane2344

9 ай бұрын

I am struggling with the correct diagnosis myself. See my comment down further.

I am a 56 year old male being told that I do not have NPH but that a VP shunt may help my debilitating quality of life symptoms. I had a brain hemorrhage in 2015 that developed spinal arachnoiditis and arachnoid cysts as to which an LP shunt was placed but after 7 months has provided no relief. Now the surgeon thinks we can add the VP shunt while leaving the LP shunt alone. Again, no NPH however I have severe gait problems with bilateral drop foot, urinary incontinence and brain fog. I am a prisoner in my own body having to completely rely on a walker and on SSDI. My anxiety level with all of this is through the roof.

@barraqaalim7459

2 жыл бұрын

I recommend you to Dr Okolo herbal medicine formula which can cure you from this disease

Unfortunately primary care physicians are not Doctor anymore, and most dont have a clue.

@LouBrikanT

Жыл бұрын

Someone told me that even real Doctors are not familiar with this, because usually kids don't make it to be 20... So, if you made it, consider yourself lucky and blessed. And let's hope and pray for a cure.

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.

I was diagnosed with NPH but had no improvement in walking after LP and removal of 40 cc CSF! HELP!! I live in FL Neurosurgeon won’t see me because of that…

@ronfeinman1656

6 ай бұрын

My wife also didn't walk any better immediately after the LP. The neurosurgeon and our neurologist said a shunt would work. We're in FL for 3 months and have appointments with 2 specialists. What is the name of the doctor who wouldn't help you?

@donnamariec1

6 ай бұрын

@@ronfeinman1656 The Neurosurgeon required a referral, and I was unable to obtain one!! I live in Central Florida… Who is the Neurosurgeon who will help your wife?? 🙏

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