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.

76 Comments for : Normal Pressure Hydrocephalus
    • Kathryn Dyndul
    • November 17, 2017
    Reply

    It was discovered almost 20 years ago that I had congenital asymptomatic hydrocephalus. I have always been symptom free and remained that way for over 15 years. At that point, 2 1/2 yrs ago, I had a fall with upper body injuries (arms, shoulders, hit my jaw). Immediately after the fall, I had difficulty walking, head and neck pain, etc.
    I was not even aware of the symptoms of hydro, and only discovered that the symptoms were what I was experiencing through my own research. I got to a neuro, and after CT, MRI and ambulatory drain, was said to have NPH.

    Ambulatory drain improved balance, walking, urinary changes, and cognitive difficulties, but caused spinal headaches (more intense pain and vomiting). Neuro said that it was a reasonable to assume that my fall caused my hydro to become symptomatic, but that I was not a shunt candidate and dismissed me.

    I returned to my neuro (more MRIs, without and with contrast) from years ago who thinks that the fall changed my hydro to “communicating”, not NPH. The plan now is to do gait and cognitive therapy, and I’m not sure what else. I don’t know how much improvement is possible or if it’s even probable.

    I can’t seem to accept either one of these scenarios 100%. I have a hard time believing that it’s even really happening to me. If anyone has a similar situation, or knows of a facility or doctor that could possibly help, please share.

  1. Reply

    Does anyone have a recommendation for cognitive therapy in the DC-
    Baltimore area for post- shunt surgery ? We’ve found a good physical therapist. Thanks.

    • Renee N.
    • November 2, 2017
    Reply

    My husband was diagnosed with NPH several years ago after complaining of headaches. The neurologist that read the MRI showed us what it was. It was determined however that it must have been from an injury to his head while he was still in the womb and that his brain must have developed normally in spite of it since he has none of the classic symptoms. He just turned 60 and is having headaches on a daily basis. Because he also has fibromyalgia and back and neck problems, we are not sure if the NPH has anything to do with it. Has anyone else heard of someone with NPH that does not have any of the classic symptoms? Is it something that will start to appear the older he gets?

      • Dori
      • November 15, 2017
      Reply

      I too had shunt surgery 6 yrs ago. It took the longest time for them to determine what was wrong with me, I’d say 3 months. I had none of the classic symtoms, not even headaches. I was just so dizzy, like having a concussion for 12 weeks. I didn’t want to eat or drink, even water. Light and sounds hurt. Once it was determined it was hydro via MRI the relief was immediate. Unfortunately I caught meningitis, and that led to the shunt needing to be replaced. Unfortunately all the pressure led to me having a 4th nerve palsy and double vision. All went ok for 6 yrs and I am presently recovering from a shunt revision surgery. My double vision slowly got better, but after this need for the revision is back. This is most disheartening.

    • Joanne
    • October 29, 2017
    Reply

    My husband had a shunt put in almost 2 weeks ago. So far we see little imprOve Ent. He was unable to walk proormto surgery and had bladder issues. After lumbar drain he had a delayed response . When he responded see it was like a light was switched on. He gets very minor headaches , so dr says adjusting it really gut now is not advisable. Will make headaches worse. Are we just impatient? How long did some of you take to see improvement?

      • Carol
      • November 14, 2017
      Reply

      Hi Joanne, I am Carol and I just had a shunt installed mid-July 2017 and every day seems a little different – some days better than others. Give it some time. My surgeon told me on a post-surgery (month later) visit “to give it some time.” It is successful – I can walk and talk so much better. So, I haven’t had any valve adjustment at this time. Don’t want to risk bleeding. I’m 65 yrs. old and was misdiagnosed 20 yrs. ago for benign positional vertigo but source of vertigo was not inner ear. Wasn’t formally tested and evaluated for it. Don’t really know the cause of my NPH, but did have head trauma from a ski accident at around the time of my “vertigo” experiences which were not often then. Twenty years later, vertigo came more often plus other symptoms showing up and the MRI’s told the story – too much CSF in the ventricles. It has taken time to get to this point. Very Lucky!

  2. Reply

    My mother is 89 years old. She has had difficulty walking since she was 85. NPH was finally diagnosed, and she had a shunt inserted 8/28/17. Her walking has not improved at all, and she is now experiencing pain in her lower abdomen.

    Any thoughts or suggestions would be greatly appreciated.

    • Ady
    • August 22, 2017
    Reply

    In Canada we live
    My wife who is 54 years old has had some serious undiagnosed mental/health issues for over 4+ years. In and out of specialists offices who insisted she had nothing wrong but mri showed NPH. In and out of hospital, twice she ended up in ICU with tubes down her throat etc. Finally after her last episode in hospital she was transfered to a special facility 2 1/2 hours away. where the patient observed and treated. Spinal taps were done several times and even thou she had little improvement in her walking she was able to communicate better. The neurosurgion felt she had been left untreated for to long and she had to much brain atrophy. she is considered a bad candidate for shunt surgery . To date it has been over 5 months at facility while they wait to transfer her to a care home she is unable to verbally communicate much and has developed seizures. I am grateful toThe nurses who take care of her as her health is declining.

    • Reply

      Please read this article regarding a man who was treated successfully for NPH. Ihttp://www.bostonglobe.com/lifestyle/health-wellness/2013/08/11/treatment-for-little-known-brain-disorder-can-reverse-symptoms-dementia-gait-and-incontinence/rntRkpbkUlc2L6AEpkXABN/story.html?event=event25

    • July
    • August 16, 2017
    Reply

    Will they put a shunt in on an 81 year old? My mother has all the symptoms of NPH and a MRI confirmed it. We are waiting now for a neuro apt.

      • Trish Bogucki
      • August 27, 2017
      Reply

      Hi July: I don’t know of any age cutoff for shunt surgery especially since it is short and considered safe. Of course your mother’s doctors are the best ones to decide what is best for her, but when I was diagnosed two years ago I was told that shunt surgery is usually the only effective treatment for NPH. It worked for me; I wish you all the best!

        • Bobbi Castro
        • October 2, 2017
        Reply

        Trish, is there a way I could contact you about your experience? My mom was recently diagnosed and we are deciding about shunt placement. Thank you!

        • Joanne
        • October 29, 2017
        Reply

        Hi Trish,
        My husband just had a VP shunt inserted two weeks ago. He had a lumbar drain previously and had a delayed response . Two days after drain was removed he suddenly got up off his chair and walked. He had been unable to walk previous to the drain. Two weeks ago a shunt was paced and we aren’t seeing much improvement. He can walk about 6-7 steps and his bladder issues have not resolved yet as they did after lumbar drain. How log after shunt did you start to seeimlrovemen ? Appreciate any opi is n or advice .

        • Reply

          Joanne- My husband had a shunt placed on Oct 13. Not as much as improvement as after the lumbar draw, but the neurosurgeon said not to expect quick result. He said not everyone has immediate dramatic improvement from the shunt because it’s a slow drain. We should see gradual improvement over weeks and months. He won’t even consider adjusting the shunt for 3 or 4 months. All in all, he has better balance and is more socially engaged. Found a good physucal therapist, but we’re having trouble finding a place for cognitive therapy.

      • Jill
      • September 7, 2017
      Reply

      They should! My husband had his FIRST at 79 and it failed so repeated age 80. It was if a switch was turned on… every symptom better so happy with surgery . There is no reason, unless other physical issues that may interfere with anesthesia NOT to do it.. quick surgery

    • Victoria Sadowski
    • August 14, 2017
    Reply

    I am a 46 year old single mom who was diagnosed two years ago with NPH and had an ETV in December of 2015. Intermittent Hydrocephalus wave headaches every 6 months since which resulted in spinal taps. I am now getting a 2nd opinion with head of
    Neuro at Columbia-Presbyterian. Dementia is the worst symptom as I am a technology professional trying to preserve my career as long as possible. Anyone out there like me?

      • Krystle L
      • August 17, 2017
      Reply

      I’m 30. I’ve had NPH since I was 3 months old and a shunt for the same amount of time. I’ve had 30+ revisions. The memory loss is terrifying for me as well. I’m finishing a PhD and love research. I also have a career as an Executive in a non-profit. I want to keep my cognitive ability for as long as possible. I’m noticing a decline more as I age than when I was younger.

      • Trish Bogucki
      • August 18, 2017
      Reply

      Victoria: I am also a technology professional and found the memory loss was more of a problem at work than my gait and balance issues from my NPH. After shunt surgery my neurosurgeon recommended cognitive therapy, and it helped improve my memory quite a bit. I have a post on the HA blog on cognitive therapy – I hope you find it helpful.

        • Michael
        • September 6, 2017
        Reply

        I am 56, and was originallly diagnosed with hydrocephalus, and was admitted for surgery. Hat was 19 years ago. While in the hospital for 9 days (I was experiencing jerking, gate problems and cognitive decline. But they could not validate the diagnosis with a flow test. No surgery was done.

        Over the years I have had intermittent symptoms, but have been lucky to keep working and being successful.

        Now I am having trouble walking across the room. Balance issue, gate problems. But Indint have incontinence, or what I understand to be dimentia. But memory and cognitive function are compromised. I’ve been referred to a neurologist once more. Is it possible that I have NPH without true dimentia and incontinence?

        • Reply

          Definitely! Ask for an MRI to confirm. Best wishes!

    • Reply

      I am 34 and was diagnosed 8 years ago in Germany. I had the ETV done and would love to chat! I have so many questions and no one to talk to about them

        • victoria sadowski
        • September 18, 2017
        Reply

        Hi Kate, I’d love to chat with you about your experiences with NPH. Reach out anytime.

        • Reima Martinez
        • October 9, 2017
        Reply

        Hi! My son who is 18 years old was recently diagnosed with NPH. He was suffering from severe headaches and frequent falling. MRI showed enlarging ventricles. Two years prior, he had a brain surgery and was treated for Non Hodgkin’s Lymphoma. He is in remission right now. Been reading about treatments for NPH. I am interested in the less invasive procedure called ETV. Do you know any doctor who specializes with this procedure? Can you share me your experiences regarding this procedure? Thank you so much.

    • Janet
    • August 11, 2017
    Reply

    Hello,
    My mother is 77 yrs old and was diagnosed with NPH about 37 yrs ago. She has a shunt and has been doing pretty well. She does not live in Colorado, but I do and am wondering if the elevation would be too much for her. We haven’t discussed it with her neurologist yet and I have read about some hydrocephalic patients getting very sick when visiting Denver. Thanks for any information and guidance in advance.

    • Tracy
    • August 11, 2017
    Reply

    My mom is 81 and we are going to have a Lumbar puncture at Mayo JAX on the 23rd along with other testing. I’m hoping she will qualify for the shunt and not be excluded due to her age. Does anyone know of someone her age who has had the shunt?

    • Deb Kantor
    • August 2, 2017
    Reply

    I am a 60 year old woman looking for advice. Recently after heart surgery had suspicious MRI & brain scan that indicated NPH. The possibly NPH discovery was completely accidental as the scans were done to rule out clots which they did. Prior to the scans, 5 years previous, took levofloxian which greatly altered my walking due to ligament damage and I have incontinence which has increased over the last few years. Appointment with specialist scheduled on August 7 to try and define the problem. What should I expect? How long does NPH take to progress from a maybe to a full blown problem? What is the long term prognosis? I am lost and confused

      • Trish Bogucki
      • August 18, 2017
      Reply

      Hi Deb: I think it’s normal to feel lost and confused after being diagnosed with NPH; I sure was. I don’t know answers to all your questions but want you to know you are not alone. The Hydrocephalus Association has just started a peer support program – it matches you with a volunteer that you can speak with about your situation. You can find the Peer Support page under the Community heading above.
      I probably had NPH for at least two years before I sought help and got diagnosed – I wish I had not waited so long. It took me a long time to get my walking back after shunt surgery; I have to believe it was because I waited so long. I would encourage you to discuss a referral to a neurosurgeon with your doctor; there’s a physician’s directory on this site. You can read about treatment options here as well. I wish you all the best!

    • Gary
    • August 1, 2017
    Reply

    I was just diagnosed after nearly 18 months with NPH. Waiting for the Cleveland Clinic to schedule the LP test. Originally I was told BPPV. Then Vestibular Neuropathy. Then Peripheral Neuropathy ….etc.. I’ve been to four hospitals, 4 MRI’s 2 CT and a VENG which was the only negative results with left eye/ear. I’ve seen a Neuro-Ontologist, Two ENT doctors and 4 Neurologists! Three told me they couldn’t help! I live in Indiana and nearly 5 1/2 hour drive to the Cleveland Clinic. I exhibit all the issues with NPH. It has been a nightmare. I never heard of it until recently. This is a wonderful sight and discussions. We’ll see if they put in a shunt or?? I empathize with everything I’ve read here. I was a trap and skeet shooter etc….not sure I will ever be able to do that again.. I’m also a Nam Vet with PTSD etc! I wish everyone hope and healing. I’ve been told the Cleveland Clinic is the best…

      • Jane
      • August 10, 2017
      Reply

      I have been down a similar path in finding out what I have and what to do about it. Cleveland Clinic was instrumental in getting me the help I needed. After seeing a multitude of doctors I was referred to one at The Ronald Reagan Medical Center at UCLA. He is the head of the Hydrocephalus Department and recognized my symptoms right away. He told me that I needed a shunt or I would be risking an unpleasant death. I had to be in the hospital only one night and went home the next day feeling like a normal human being again. Do not fear the shunt,it is nothing short of a miracle. Good luck to you. There is hope.

        • Erv
        • August 11, 2017
        Reply

        Hi jane, Hope all is well. My mom is suspected with NPH but hasnt really had the proper diagnosis. I am very anxious and worried about her. She is 64 y/o. Can you please tell the name of the doctor at ucla who specializes in NPH?

      • Cal Keir
      • November 26, 2017
      Reply

      Hi I am a sad lady in England, Ive been looking for support for my x husband for quite some time. Sadly no one seems to want to know, family says its just the stress of the job. I get various excuses why they will not see him. One was hes really not that bad and its all in my head! Anyway finally he has been diagnosed with NPH so hopefully he can have some surgical intervention, Its hard carrying him and the twins who I protect at every corner and they just don’t realise it. A good result that Ive had a diagnosis now based on brain scans, strange gait, cognitive impairment and incontinence. Hopefully we can get some surgical intervention sooner rather than later> Sorry for picking on you to write to, I hope you don;t mind? I am signed off work at the moment with PTSD so I quess thats why I picked on you…sorry!
      Kind regards

      Cal
      Oh sorry about not using spell or grammar checker hate those Americanisations, sorry! Im a teacher of English lit and language. Favourite book of all time is of mice and men. so sad that our government has taken it off the curriculum

    • 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?

  3. 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.

      • Reply

        Hi Kathy. I am confused !! I was diagnosed with NPH last week after complaining to my GP about my issue with balance. He sent me to a Neurologist that week where I had an MRI that day which showed my DX. Now what? He will see me again in 6 weeks. I need to do Physical Therapy til then but I am so fatigued the PT is so exhausting. Do you think I need the PT prior to spinal tap and shunt? Your post was the most current, I sometimes feel that I could just lay on the floor in a fetal position. Were you tired, exhausted and sleepy all the time, My doctor is on vacation. Thanks for your time and any info you might have, Mary Ann

          • Penny Trottier
          • September 15, 2017
          Reply

          Hi Mary Ann Green I am as confused as you, I had an injury to my brain when i was 12 now i am 61 had a few issues over the years but i never sought any medical treatment wheras this issue might have shown up earlier. Anyway I finally told my doctor in May of 2017 because of my concerns and issues perhaps i should have a scan he sent me for a ct scan where this showed up. He sent my pics to a very busy neorosurgeon who replied after a couple of months that he did not think i needed surgery at this time. So my doctor was ready to just let the issue go with no follow ups. I was a little upset saying should I not be seeing a neourolgist at this point to at least be diagnosed. Dementia is my worst fear. So now I finally have an appointment in December of this year. Wow I am from northern ontario Canada and it seems like little attention is given this issue. How are you doing now better I hope. Feel free to email me personally if you would like someone to chat with.

    • 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.

      • Dianne
      • September 5, 2017
      Reply

      Hi Christine, My 74 yr old husband has the sane condition. He has underlying conditions that preclude him from having a stunt. I am wondering what I have to do next. Can I have him at home, as a nursing home is too pricey for us.

    • 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

    • Reply

      Don’t put it off. The longer you wait, the greater chance for additional damage to your brain. If the ventricles enlarge for too great a period, there may be more profound impairment in your mental function. This is not surgery to repair a torn ligament or damaged knee, this is your brain. Don’t be stupid!

  4. 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

  5. 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?

      • alice boelter
      • August 2, 2017
      Reply

      I’m interested in knowing what doctor at MGH handled your shunt procedure. We’d been exploring Brightam & Womens’, but their expert moved out to UMass MEdical in Worcester and time is passing before the procedure can be scheduled there. Time is not to be wasted in my estimation . THank you Glad to hear you were successfully treated.

        • Betsy Epstein
        • August 14, 2017
        Reply

        Hi Alice,
        Dr Johnson operated on me in November of 2016. I had to wait for weeks after the test shunt but I wanted to stick with him. He’s the best. Make an appointment with him and maybe you can get a cancellation. I could not stand on my own and was incontinent. Cognitively I was fine. I am now walking with only slight balance problems and enjoying life. Feel free to contact me.

    • 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.

  6. 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?

  7. 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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