Normal Pressure Hydrocephalus

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Normal pressure hydrocephalus (NPH) is an accumulation of cerebrospinal fluid (CSF) that causes the ventricles in the brain to become enlarged, sometimes with little or no increase in intracranial pressure (ICP). In most cases of NPH, the cause of blockage to the CSF absorptive pathways is unclear. The name for this condition, ’normal pressure hydrocephalus,‘ originates from Dr. Salomon Hakim’s 1964 paper describing certain cases of hydrocephalus in which a triad (a group of three) of neurologic symptoms occurred in the presence of ’normal‘ CSF pressure –  gait disturbancesdementia, and impaired bladder control. These findings were observed before continuous pressure-recording techniques were available. The phrase ‘normal pressure’ is misleading as many patients experience fluctuations in CSF pressure that range from high to low and are variable within those parameters. However, normal pressure hydrocephalus (NPH) continues to be the common name for the condition.

Who develops Normal Pressure Hydrocephalus?

NPH is most commonly seen in older adults.

  • It is estimated that more than 700,000 Americans have NPH, but less than 20% receive an appropriate diagnosis.
  • Without appropriate diagnostic testing, NPH is often misdiagnosed as Alzheimer’s disease or Parkinson’s disease, or the symptoms are attributed to the aging process.
  • NPH is one of the few causes of dementia that can be controlled or reversed with treatment.

Click here to watch our video WHAT IS NPH?
Click here to download our booklet About Normal Pressure Hydrocephalus.

38 Comments for : Normal Pressure Hydrocephalus
    • Debra
    • July 4, 2017
    Reply

    My husband was diagnosed with NPH 4 years ago after seeing the 4th Neurologist and had shunt surgery which went very well and his recovery was quick. The Neurologist said that he had some brain atrophy from being misdiagnosed for so long but that he should retain from the surgery forward. My husband is a very educated bright man and for the first year seemed back to normal but for the last year his personality has changed slightly and the doctor said that his brain had more atrophy. Has anyone else experienced this situation and if so what did your doctor say/do?

  1. Reply

    My husband is a very athletic 80 year old who hikes, mountain bikes and lifts weight every day. He is in perfect health except he had these two very strange episodes while hiking. He was just diagnosed with mild to moderate NPH with an MRI Flow study. Does anyone know if you have a shunt put in if you can still continue with an athletic life? And how difficult is it to stabilize the condition once the shunt is put in. In other words, how have you all done with needing adjustments to the flow of the shunt? And have you ever been caught in a situation where you were away from home when the shunt started giving you problems?

    Thanks to all of you who take your time to respond to my questions.

      • Trish Bogucki
      • July 3, 2017
      Reply

      Hello Michelle: Your husband’s doctor is the best one to advise you on what to expect following surgery. I had shunt surgery two years ago and after two weeks of recovery I have been going to the gym and/or physical therapy 6 or 7 times a week ever since. When I saw my neurosurgeon for an annual checkup this year he told me my walking looked great and that I should keep up my exercise program. I suspect that my daily cardio, strength and balance exercises may not be as challenging as your husband’s mountain biking and weight lifting, but they definitely work up a sweat, and my surgeon was all for them.
      My shunt’s flow was adjusted several times after the surgery but that was a very easy in-office process using a magnet the doctor placed on my head – it took just a minute. And I haven’t had any problems with my shunt since the final adjustment.
      Best of luck to you both!

      • Kathy
      • July 8, 2017
      Reply

      Hi Michelle, I’ve had a shunt for over a year. In my experience, there’s nothing you can’t do–no physical activity is off limits. The only thing to be careful of is MRIs — their strong magnets can affect the shunt’s settings. (It’s very easily fixed and not an emergency). Fridge magnets, toys, power lines, airport scans are harmless. It’s great to have my balance back-I enjoy activity in a way I couldn’t before.

    • Beth
    • June 26, 2017
    Reply

    I was misdiagnosed for five years with worsening symptoms. I had memory problems, deteriorating gait and incontinence. I was told by my neurologist that it was early onset Alzheimers or Frontal Temporal Dementia. I was only 63 and felt I was given a death sentence. I put my affairs in order. I was falling and continuing to deteriorate. When I finally switched neurologists and then saw a wonderful neurosurgeon, I was diagnosed with NPH. After immediate shunt surgery and two weeks in rehab, I completely recovered. If it had not been for that wonderful surgeon, I probably would not be here today. I don’t understand why NPH is so underdiagnosed!

      • Anthony
      • June 28, 2017
      Reply

      Hi Beth, my name is Anthony Haynes and I am researching this site due to my Mother’s diagnosis of NPH. My Mother is going to have a Shunt inserted on Friday and will be released by Sunday. I am concerned about trying to find good rehab services for my Mother. Could you be so kind as to let me know who you used for this because am truly in the dark about this and would appreciate the help. Whether you can help or not, thank you for taking time to read my reply. Sincerely, Anthony

        • Trish Bogucki
        • July 2, 2017
        Reply

        Hi Anthony: I have NPH and had shunt surgery two years ago, and right after surgery my neurosurgeon referred me to a nearby physical therapy center. Later he also referred me for cognitive therapy at a rehab center connected to the hospital where I had the surgery. Can you ask your mother’s doctor or a nurse in their practice for rehab referrals?

        I hope all went well with your mother’s surgery. I wish all the best to both of you! – Trish

    • Christine
    • June 13, 2017
    Reply

    My mom was diagnosed with NPH last week. The doctor indicated that she is not a candidate for treatment with the shunt. The diagnosis also included dementia as a result of the NPH. She has memory issues, incontinence, balance problems and a shuffling gait. Does anyone have any information concerning a similar situation? I want to know what happens next without any treatment avenues.

      • Beth
      • June 27, 2017
      Reply

      Don’t understand why she is not a candidate for shunt treatment. Get another opinion.

    • Patsy Johnson
    • June 12, 2017
    Reply

    My 70 year old sister has just been diagnosed with dementia. Her three main symptoms are memory/confusion, gait imbalance and incontinence. She did have a brain scan and psych exams. Could the NPH been overlooked. I noticed her gait change several years ago. Please advise if I should insist on further tests even though she has a brain scan. I have been caring for her for 2 1/2 months. She is a widow and has no children. I feel responsible to seek out all avenues to help her. Thank you.

      • Beth
      • June 27, 2017
      Reply

      Please get another opinion! The symptoms you describe are classic for NPH!

      • Anthony
      • June 28, 2017
      Reply

      Hi Patsy, I am now dealing with my Mother’s care and part of her diagnosis came from the MRI image, where the lakes of CSF on her brain were very apparent. If you have not had an MRI I would suggest it. Thank you so much and good luck.

    • Reply

      Hi Patsy,

      I had the first symptoms of NPH last year at age 69. In my case it was “only” gait disturbance but it was debilitating. I knew I had NPH since my older brother now deceased had it.

      The key to diagnosis is the lumbar puncture (or spinal tap). A small amount of CSF fluid is removed to determine the effect. As soon as I had it (that afternoon) my walking became normal – but only lasted a day as more CSF built up again.

      The answer to your question is a resounding YES… insist on the lumbar puncture. And advise your sister that the procedure is not very painful.

      • janet white-stayler
      • July 11, 2017
      Reply

      Hi Patsy. I had my first symptoms three years ago. I was falling frequently, was incontinent of urine. I had trouble with numbers and balancing my checkbook. I was extremely weak and tired. I saw several neurologists and they diagnosed me with Parkinson’s disease. I was put on Sinemet (classic parkinson’s meds) but it did nothing. Finally, a nurse called me from the NPH clinic and offered an eval. It all went uphill from there. I had my shunt placed in July of 2016 and now I’m 76 years old and can again cook for my husband. I go to an exercise class three times a week; I volunteer at the Senior Center once a week. My husband and I help his father who is 94 and lives alone. I am absolutely perfect thanks to NPH Clinic.

    • Laura Glick
    • May 24, 2017
    Reply

    My mother passed away a few months ago and I have a strong feeling that the delayed diagnosis and lack of treatment of NPH contributed to her extreme decline in health. For years, I knew something was wrong, but medical professionals would pass her symptoms and complications off as aging and dementia. I am heartbroken. She was 66. She was amazing and what makes it worse is knowing that her last years didn’t have to be the way they were had she been correctly diagnosed and treated for NPH. I want to become an advocate for people with NPH and increase awareness of the disease. If anyone knows how I can get more involved, please contact me.

      • Syed Karimulla
      • July 20, 2017
      Reply

      Hello Laura,
      My mother diagnosed with NPH & FLTD. Again the doctors initially said these are age related issues and diagnosed it late. Initially she was given medicines for four months, but not much improvement. Then she got admitted in hospital and lumbar puncture was done. After lumbar puncture also no improvement and she was not able to walk now. At present she was having indigestion, vomiting. These are also symptoms of NPH? Again we admitted in hospital for a week for loose motions. Can you please share whether these symptoms are also of NPH?

    • Pat
    • May 10, 2017
    Reply

    I was diagnosed with normal pressure hydrocephalus today after a CT scan with and without iodine injection. I have slight trouble with balance, and so far no memory or continence issues. I want to put off getting the shunt procedure. Do you have any suggestions about that? Thank you for any input.

      • Tiffany
      • May 29, 2017
      Reply

      I was wondering when they found mine…I was apparently too old to be shunted and so they removed it…I have developed seizures since then…I am 38 now and am on disability…I had a career before the surgergies and now I can’t even drive to the grocery store…Get 2nd, 3rd and 4th opions!!!!!

        • Ron
        • May 31, 2017
        Reply

        Don’t worry about the shunt installation,was 37 when I had it now at 57. It is not a big issue to live with it.

      • laura
      • June 22, 2017
      Reply

      I had an ETV. You might want to check that out

  2. Reply

    I have been recently diagnosed with normal pressure hydrocephalus. I am getting my shunt put in in a week. I am wondering what the challenges are also how people cope and deal with living with a shunt.
    I am nervouse about the operation to put it in. Any advice welcome.

      • Jeanne Hutchings
      • May 3, 2017
      Reply

      My husband had his shunt placed almost 2 years ago and it was like a switch was flipped, the improvement in his gait and mental capacity. I have noticed some dementia symptoms as I am a registered nurse . His shunt has been adjusted once since surgery . I wish you the best with your surgery and recovery.

      • Tiffany
      • May 29, 2017
      Reply

      Th a surgery is no big deal…they will shave a portion of your head..finding the right draining number will be the problem.. .prayers going your way

  3. Reply

    I live in the Boston, MA area. I was diagnosed with NPH by a wonderful neurologist (who was actually treating me for Ideopathic peripheral Neuropathy when he “discovered” the NPH). I had shunt surgery in January 2017 at Massachusetts General Hospital and have experienced notable improvements in gait, memory, and mental health. The shunt has been adjusted once since surgery. Does anyone know of an NPH support group in eastern MA?

    • Pat
    • March 27, 2017
    Reply

    My husband has been diagnosed with NPH as he has an unusual gait and has balancing issues. That is the only issues as this time. He is comtemplating having a shunt but concerned as to the side effects and if he will have a positive outcome.

    • Reply

      My Mom was diagnosed with NPH last year. She had a shunt in February and we are already seeing great improvements. It’s nice to have her back

    • Pat
    • March 27, 2017
    Reply

    It took several months to diagnose NPH. My walking deteriorated quickly & I was using a cane. I had VP shunt surgery one month ago today. I had severe nausea & vomiting for a few days after the surgery . However, after adjusting the flow rate, I’ve had no more nausea, etc. Walking has improved, as have cognition & incontinence.

    Does anyone suggest getting a medical alert card or bracelet?

      • June
      • April 26, 2017
      Reply

      A few years ago I was caught in an enviroment where those are unfamiliar with NPH and VP shunt placement.. when the sunt failed they were completely lost. Yes, I highly recommend weari g a medical id bracelet.

  4. Reply

    My husband was diagnosed 7 yrs ago. He has had several adjustment​s on his shunt. Three weeks ago, he has had some recent declines in his walking and mental recalls. We don’t understand what is happening.? Can anyone help us in this matter? Are there any support group available?

  5. Reply

    My husband was diagnosed with NPH almost 2 yrs. ago. He walks very slowly now and needs either a cane or a walker. His memory has declined in that time and his thinking process is most certainly compromised. We hesitate about the shunt because of the poor results–only 25-75% have SOME help, but it is the only recourse we know there is for treatment. From last years MRI and test results in appears that his condition is only slowly deteriorating although I see much change in his condition since last year. Is there a particular website or association besides this one where additional updated info is available?

    • Reply

      We had the shunt done 7 yrs ago and things improved with work on cognitive area as needed. Now it appears to be happening again. What are you doing now?

    • Elizabeth
    • March 19, 2017
    Reply

    I have recently been diagnosed with nph and am going to have surgery. Any recommendations for physical therapy following the surgery?

    • Reply

      Physical Therapy after shunt surgery made a big difference.

        • laura
        • June 22, 2017
        Reply

        Oh good! I had an ETV in March and am having horrible gait issues again. I’m trying to get back into PT. Has it helped anyone’s gait after surgery?

    • Barbara Brown
    • June 20, 2016
    Reply

    I have dealt with NPH for over 8 years as a caretaker. If I wrote a big it would be a guaranteed best seller. I see people almost daily that I recognize the NPH symptoms affecting them and will stop and talk with them and tell them about NPH. Several have gone for tests and had the shunt put in and walked off the operating room table. Not enough information is available or stories published regarding NPH. Knowledge is the lifesaving power to correct those that may be afflicted with it and have it blamed on Alzheimers, Dimentia or Parkinsons. So sad.

      • Jan
      • January 27, 2017
      Reply

      Hi Barbara
      I am really worried about my mum. She is a very youthful 68. Recently retired from a very stressful job. Showing signs of PSP but the doctors have not given a diagnosis yet. Her symptoms are: slowness in movement, difficulty finding words and slurring, forgetfulness, gaze problems. Do you think NPH is to be ruled out based on these symptoms or is it possible to have these symptoms with NPH? Her MRI and DaTSCAN were normal

      • Jean Cary
      • February 11, 2017
      Reply

      I have NPH and was lucky enough to be diagnosed after about 4 years of worsening symptoms. (not able to be diagnosed by university of Pennsylvania)

      I was diagnosed by by brother’s DO when I came to Las Vegas to help him with his medical issues.

      I’m convinced that a lot of folks, including some in the memory care facility where I’m staying now, could be helped by an accurate diagnosis and treatment.

      As soon as I get into my next placement, I want to add my efforts to advocating for greater awareness of NPH. For now, I’m trying to get into an assisted living program offering a variety of services that will help me improve further. I am interested in more information about the personal experiences that patients and caregivers can offer, such as how long it’s taken for improvement,etc.

      PS, I’ve worked for many years, most recently as a disability lawyer.

      • Jean
      • March 14, 2017
      Reply

      I agree that the condition is not diagnosed enough, given what can happen to some folks who become extremely disabled without treatment, as happened to me. Fortunately, I was able to get surgery and improved, but I suffered the effects of lack of treatment.

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