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.

139 Comments for : Normal Pressure Hydrocephalus
    • Sue
    • December 10, 2018
    Reply

    I was born with normal pressure hydrocephalus in 1973 and has had a VP shunt over 40 years now ive been told the shunt has decalcified and is breaking off the shunt is not in one piece it is really painful they cant operate to remove it to dangerous to remove, even though it doesn’t work no more, constant headaches what there putting down to migraine, pain in shunt all the time has anyone else suffer the same thing

    • Nancy
    • October 30, 2018
    Reply

    76 year-old Father-in-law diagnosed with NPH Spring 2018, and had shunt placed May 2018. Was in SNF for 10 days (only because he developed a UTI- insurance would have kicked him out before even one week of therapies). Went to Assisted Living, with therapies that lasted maybe 3 weeks. His legs are way better and he can walk fine. BUT, bowel incontinence is the biggest problem now. He had some prior to surgery but it is daily now. Has anyone had any experience with this? We still cannot figure 100% if he does not feel it until it is too late, if he just doesn’t care anymore if he goes in his pants, or if he does not realize if it is happening. We cannot get a good answer from him.

      • Lakisha Harris
      • November 14, 2018
      Reply

      Hi Nancy,

      I would like to suggest joining our NPH Facebook group which I think you would find beneficial as well as get your questions answered. If you are interested, please use the following link to submit a join request https://www.facebook.com/groups/HydroAssocNPH/?ref=bookmarks.

      All the best,
      Support and Education Team

        • Nancy Gernstetter
        • November 14, 2018
        Reply

        Thank you! I just sent my Join Request.

      • Rene Hs
      • December 11, 2018
      Reply

      My mother had shunt. Placed ar age 68 and is now 80. Had cath placed 1 1yr ago due to severe incontinence. Dementia sx have been mild but in past month things have gonehave gotten terribly bad, BM and not aware of it, thinks she’s in the 1950s, , visual and auditory hallucinations, roaming at night. Has 24 hr supervision care in NY home. CT scans show nothing abnormal. IS This End stage nph?

    • Glenda Duncan
    • October 18, 2018
    Reply

    I am 69 years old and was diagnosed with NPH about a year ago. They did the lumbar drain test on me for 4 days, and it caused the spinal headaches so they couldn’t put the shunt in. I live in Oklahoma City, and I am wondering if there is any point in going someplace like the Mayo Clinic? I am having tremors, gait problems, balance issues, and it affects my speech a little. The last neurologist I went to told me he wasn’t convinced it is all from NPH, because there are other things he sees on my brain. At first they thought I might have MS, but that was ruled out. It appears to me that there is nothing anyone can do other than a shunt, and they can’t do that on me because of the headaches. Just thought there might be something I don’t know about that could help. Does anyone have any suggestions?

      • Victoria
      • October 28, 2018
      Reply

      Hi Glenda my 84 year old father had a successful shunt 1 year ago, I’m not sure if your Dr says you can’t have shunt because of headaches but I don’t believe that is correct. My father’s headaches were relieved after shunt. You may need to be persistent with the Dr’s. Sending my best to you Victoria

      • Angela Minton
      • November 19, 2018
      Reply

      Glenda, I am 71 years old. also live in Oklahoma City, and was diagnosed with NPH nearly twenty years ago. Since I had no symptoms, I dismissed the diagnosis—the Normal Pressure part sounds innocent enough. I began having mild gait problems about 18 months ago, occasional incontinence, but no cognitive problems that I am aware of. But walking like a drunk person is very upsetting. I have seen two neurologists in the past 18 months, the first in Colorado (she was dismissive), and more recently at the Neuroscience Center at Mercy. The Mercy neurologist identified the NPH on my MRI but did not think it was serious enough to warrant a shunt. I have just completed a series of tests for neuromuscular disorders and with the exception of Striated AB, all results were normal. I just saw a psychiatrist, who assured me that my symptoms are not the result of anxiety or depression— he is convinced I am dealing with NPH. I am in limbo and so confused. I am having a sleep study test done tonight, but I don’t think anything will come of it. I am thinking about contacting the Mercy neurologist and insisting on another brain scan (MRI or CT?) or spinal tap—whatever the next logical diagnostic is. I feel like I am just sitting here waiting for this to get worse. Like my life is on hold. I’m glad to have found a kindred spirit.

      • Angela Minton
      • November 19, 2018
      Reply

      As far as suggestions, I wish I had some. When I was first diagnosed with NPH, the doctor told me that if I ever developed symptoms, there was a very simple operation to correct it— a shunt. I thought “Okay, no big deal.” But suddenly it seems that it is a big deal— so totally confused. Why wait for the symptoms to get worse?

    • Grace Purg
    • October 3, 2018
    Reply

    I was diagnosed with Parkinson”s syndrome in may of last year. I had essential tremors since age 55. I have a stooped posture, right arm was not moving. I also have a pulsating feeling in my body. My legs tingle and they were cold.i was advised to give a try on Total cure herbal foundation herbal formula by my doctors which i truly did and the herbal treatment help me get rid Parkinson disease PD within the short period of 15 weeks usage,please do not hesitate to place an order from them at totalcureherbsfoundation .com because the herbal products relief me automatically and terminated all the symptoms.

      • Barry Gordon, MD
      • October 21, 2018
      Reply

      Hedaches from a lumbar puncture depend upon how much fluid is taken out and also how fast. I doubt that the flow of spinal fluid through a shunt would be fast enough to cause headaches.

    • Maureen Stewart
    • September 19, 2018
    Reply

    I was diagnosed 2 years ago at age 63. Symptoms were tremor in right leg, loss of handwriting ability, and soft voice. I also have difficulty rising from a seated position and have balance issues. I started out taking only Azilect, then Mirapex, and 6 months ago Sinemet. Several months ago I started falling frequently, hence the reason for Sinemet. I tried every shots available but nothing worked. In June 2018, my neurologist and I decided to go with natural treatment and was introduced to Natural Herbal Gardens natural organic Parkinson’s Herbal formula, i had a total decline of symptoms with this treatment, the Tremor, falling frequently, stiffness, body weakness, balance issues, depression and others has subsided. Visit Natural Herbal Gardens official website ww w. naturalherbalgardens. com. This treatment is a breakthrough for all suffering from Parkinson’s, don’t give up Hope. Keep Sharing the Awareness, herbs are truly gift from God.

      • Deborah
      • September 21, 2018
      Reply

      Thank you for this information>

    • Lai Keng
    • July 28, 2018
    Reply

    My sister has recently been diadnosed with NPH after an initial Ctm followed by a spinal tap. The visit to her specilist neurosurg was prompted by memory issue, gait, slight visual limitation. AT the LP , the surgeon stated that he was happy to insert the shnt within 24hr post the spinal tap. Because we had never heard of NPH until then, we hesitated about the shunt procedure. She is 75 yars old. THe changes in hher was rather sudden (over 10months periodapprox (she was acting ?behaving like her normal self previously, hence, it came as a shocked to me (I am a nurse, we actually travelled for 3 weeks to China, during the trip, I had not noticed significant alteration (of her cognitive skill and gait) We had been recommended to have acupuncture to condition her in preparation for the shunt but she is really worrying sick about the shunt as she had never been sick (except for common colds and some tummy upset due to food selection. My sis daughter and I have been trying to comfort and ressure her about the shunt, Having read the different comments/concern and experience of everyone who have been seeking support on this site, I think I will and must write a list of question to raise with another neorosurg, (whom we have decided to seek another opinion about the pros and cons of shunt base on my sis’s background , asking for another CT before we make the final decisions.Any comments and alerts re questions to the neuro surg ARE MOST welcome. Good luck to All. I live in Australiam but my sis lives in Malaysia.

    • Beverly Alleman
    • June 27, 2018
    Reply

    In 2014 we rushed my 70 year old husband to the ER thinking he had a stroke, after an MRI and spinal tap he was diagnosed with NPH. 3 months later he had the shunt surgery and things have slowly but surely gotten better. Recently, he has these little episode were his legs feel weak, he feels nauseated and thinks he’s going to faint. After he sets down for a 1/2 hour all of the symtems are gone and he can carry on. None of his dr’s seem concerned. Any other NPH folks suffer with these type of symptoms?

    • Reply

      HI Beverly: I have had episodes that are somewhat like that but I did not attribute them to my NPH but rather to dehydration. In facrt just this past weekend after a very strenuous step class where we were all soaked and breathing hard I had the feeling I was going to pass out so I sat down fast. I think I just overdid it (I love that Step class!). Does your husband have these episodes after exerting himself? Have you considered checking with a cardiologist?

      • BrendaHale
      • October 17, 2018
      Reply

      I’ve had my shunt over 5 yrs. And I still have muscle weakness , tingling n numbness in both legs.

    • Ed Matthews
    • May 5, 2018
    Reply

    I was diagnosed with NPH by my Neurologist in late 2017 after both my brain MRI and radionuclide cisternogram were suggestive of NPH. Was referred to a Neurosurgeon who recommended VP shunt surgery.

    Codman variable pressure valve was installed on Feb 19, 2018. Initial valve setting was 140 mm (14 cm). After 10 weeks without any improvement in my triad of symptoms, my Neurosurgeon reluctantly agreed change my valve setting to 130 mm (13 cm). This setting change was confirmed on the day of change by xray.

    Have not seen any improvement a week after the pressure was changed.

    Is a lower setting safe to consider?

    Can anyone else who has seen no improvement tell me their story?

    • Reply

      Ed: My neurosurgeon took a very conservative approach to opening my valve so I didn’t see improvement for several months following my shunt surgery. He also recommended physical and cognitive therapy and they helped me a great deal. Eventually he put my Medtronic valve on the lowest setting and I did finally see improvement but I really needed to continue PT to get my walking back. His primary concern was overdrying the brain – is that your doctor’s issue with changing your setting? Now it’s three years later and my ventricles are still enlarged and the shunt setting is the same but thanks to a ton of PT and some cog therapy I am back to normal. It’s worrisome that you haven’t seen any improvement – have you considered seeking a second opinion?

      • Jill
      • July 23, 2018
      Reply

      Ed,
      Did you have 3 day lumbar drain before your shunt surgery?

      • Brenda
      • October 17, 2018
      Reply

      My value setting is down to40

    • Roger Little
    • April 3, 2018
    Reply

    I was diagnosed by an emergency room Dr, with NPH and referred to a nuerologist. The first thing the neurologist said was that I did not have NPH because it was too rare and if I did have it there would nothing that would improve it because I have had it so long. I suffered a concussion 20 years ago and never really recovered. I switched nuerologists and ended up having a shunt installed 3 years ago.

    It was nothing short of a miracle, I can’t even begin to say all of the ways my life has improved. No more shuffling, no more incontenence, no more memory loss. I had been on opioids for 20 years due to severe muscle spasms in my back, I was off within one month with no withdrawal symptoms or muscle spasms.

    I wake up every day with energy that I have’t felt in 20 years. I thank our Father in Heaven every day and I help people in need every chance I get. My advice woud don’t give up looking for answers and don’t be afraid to switch Drs.

      • Stephen F. Von Till
      • April 17, 2018
      Reply

      I am a male lawyer 73 years of age in CA. Suffered Subarachnoid hemorrhage in 2004 . Developed NPH in the following years. Treated with magnetic Medtronic shunt in 2010– improved significantly but not not completely. Now gait, etc. deteriorating, Pressure settings to shunt have been changed by dr. throughout the years, but also changed on its own without known cause . Recently checked and found it changed on its own from .5 to 2.0. Perhaps environmental magnetic influences. What make shunt do you have and what pressure setting? My ideal setting ??? has been .5. It would be great to communicate with you on these issues. — Steve von Till

      • Jonathan
      • May 10, 2018
      Reply

      For Roger,
      I am pleased to read about your recovery! My father had a shunt for symptoms for NPH 2.5 years ago after being diagnosed with early on-set Alzheimer’s, then demrntia. After the shunt was placed, he and his family experienced with him remarkable improvement, albeit the immediacy peaked at three months then semi-slid back to pre-surgery activity. However, the slide did not lead to pre-operative conditions as there is still marked improvements from 2.5 years ago to the present.
      I do recall his neurosurgeon commenting the shunt may/may not work, so hold back expectations. How did you present your case to your neurologist to have a larger capacity shunt placed? Any specific words, phrases, or other evidence to lead the way that were presented to your neuro. to make your case strong to go forward with the second shunt placement?

        • Patricia K Robinson
        • September 15, 2018
        Reply

        i RECENTLY RESPOND TO A POST AND CANNOT REMEMBER WHO IT WAS. i HAVE THIS AND HAVE A HARD TIME TYPING SO WAS WONDERING IF IT MIGHT BE YOU. hAVE BEEN TO MANY NEUROLOGIST AND THE LAST ONE SAID A SHUNT WOULD NOT HELP HE SUGGESTED bALANCE THERAPY HE TOLD ME NO SURGEON WOULD TOUCH IT.i HAVE A TERRIBLE TIME WALKING AND MY BALANCE. I EVEN WENT TO cLEVELAND cLINIC AND THEY SENT ME HOME TO SEE A FAMILY DR. i AM 78 AND FUNCTION WELL MEMORY ETC NO HEADACHES tHEY DID A dat SCAN TO RULE OUT pARKINSON WHICH SHOWED NEGATIVE. I AM CONSIDERING GOING TO jOHN hOPKINS. wOULD YOU HAVE TIME TO RESPOND WITH YOUR THOUGHTS? pLEASE EMAIL IF YOU CAN. lOTS TO TALK ABOUT BUT TYPING IS REALLY HARD. tHANK YOU.pATRICIA rOBINSON

          • David Rule
          • November 9, 2018
          Reply

          Johns Hopkins has a center for spinal fluid issues. Dr Mark Luciano is the NS who heads the department. He specializes in NPH. He put in my vp shunt over a year ago, and it has really helped me. Check him out.

      • David Roper
      • May 18, 2018
      Reply

      I am 75 now had the shunt 7 years ago – took 5 mins to walk 5 feet. The dr adjusted magnetic gizmo in my ear 2 times after CAT scan for water levels. I went from no memory about daily things to programming my computer now and walking to mailbox daily 200 ft and back normally. This color combination is terrible on this screen should be black on white. It’s light blue n white. Stupid.

      • cici
      • June 22, 2018
      Reply

      Amen thank you for your testimony!!!!

    • Reply

      i am a female 78 years old. I was informed of NPH and suggested he use a shunt five years ago’He did a spinal drain that did not affect my walk. I refused to have the procedure. It was scary and I was afraid Since then I have several falls and a concussion from tripping on a broken sidewalk. The real problem now is my weak legs and balance to the extent I am pretty much unable to walk much. My current neurologist told me a shunt would do no good and he knew no doctor who would operate he suggested I have balance therapy three times a week. I was treated at Cleveland Clinic they sent me home and told me see a doctor who treated old people( I can’t remember his title) he sent mt home told me to see my family doctor. I contacted John Hopkins in MD. They sent a lot of information asking for records and discs.The hospital is probably 6 hours from me. I don’t know what to do, Going to start therapy this coming Monday. I am so glad to read your online comments and would love to talk with you. So much to say but difficult to use computer.Sincerely, Patricia Robinson

  1. Reply

    .my wife have 32 weeks pregnancy. my baby have hydrocephalus. after birth possible treatment without any surgery?

    • Mary L
    • March 9, 2018
    Reply

    My mom lives in Ireland and I live in California. I emigrated many years ago. My mom has not been diagnosed with NPH but I am convinced this is what she has. She is 76 and several years ago she began to complain of an inability to walk with her normal gait.. She complained of pain in her legs and was unable to move her feet and shuffled. Because she has rheumatoid and osteoarthritis doctors explained it at first as symptoms of her arthritis. Then her rheumatologist said her arthritis was under control and would not be contributing to her increasing difficulty in mobility. When we took her to a neurologist he said he believed she may have Parkinson’s disease. Then they ruled out Parkinson’s and we were told there was nothing wrong with her legs it was all in her mind By this time she was suffering from deep depression having been told there was nothing wrong with her legs. She then began to exhibit mild forgetfulness especially in remembering words in the middle of a story or short term memory. At that time we started to hear Alzheimer being thrown around which was ridiculous. Then last year she began to develop urinary incontinence. She is currently being treated in a psychiatric unit for severe depression which is now bordering on Psychosis which I blame on the misdiagnosis of NPH. No one had ever mentioned anything to us about NPH and I had never even heard of it until I did some research on my own and found out about it several weeks ago.. I immediately told the doctor ( whch was several weeks ago) about my suspicions and that I wanted a lumbar puncture done.
    The doctor today told me since my conversation with her they have ruled out NPH because they looked at a previous MRI from a year or so ago and there were no signs of NPH I told her that the only way to rule it out was to do a lumbar puncture. I am wondering how I can convince them that my mum needs to have a lumbar puncture to rule NPH out. I am so far away from her and my heart is broken because I know she must have NPH and for 7 years no one mentioned it to us.

      • Shelby
      • April 27, 2018
      Reply

      My husband had the gait problems, incontinence and memory problems. The dr. diagnosed him with dementia because he is 82. We have a daughter who is an R.N. and one who is a Nurse Practitioner. They began researching NCP and were convinced their dad had this. They insisted the Neurologist have the Lumbar Puncture done (because the MRI did not show it). After it was done, and a diagnosis made, they sent him to a Neurological surgeon and he had surgery a week ago. There has been a tremendous change in him already and we are hoping it will continue to change. Good luck in insisting that she be checked for this.

      • Thunder
      • June 5, 2018
      Reply

      Hire a patient advocate for your mom and DEMAND she be treated by a neurologist that specializes in us at l6, well experienced with NPH.
      My very active 85 year old mom was diagnosed with an acoustic neuroma. It was determined to be inoperable. She also had “questionable” signs of fluid build up showing on her MRI in January. It was bypassed as they thought was doubtful that she had hydrocephaly. By April, she couldn’t walk, she had complete incontinence, she had SEVERE dimentia and could not care for herself at all. Total incapacitation. She couldn’t even complete a trial lumbar tap because she was so confused, she ripped the drain and her IV out
      We took her to a 3rd neurologist and he didn’t run any trial…he put in a programmable shunt. We prayed and held our breath. The next day I broke I to tears as I watched my mother walk to the bathroom and use the toilet. She told me, “Oh for crying out loud… don’t get hysterical about it’ Myom was coming back. It has now been 2 months since surgery. She is walking with a walker as she still has balance issues from the neuroma. She is getting physical therapy with a concentration on vestibular and to build back her muscle tone. She list 10 lbs of muscle mass from inactivity. DON’T LET THEM STOP YOU.
      We were told to put my mom in a nursing home… She had Alzheimes. We KNEW they were wrong.
      Get that advocate if you cannot be there in Ireland. But really… You should do EVER6 you can, to get there and fight for her.
      Prayers for your mom and you. Don’t give up!

      • Tracy
      • June 27, 2018
      Reply

      Dear Mary,
      My heart aches for you. You must feel at such a loss being so far away and your mom now being tortured mentally and emotionally too. I hope that the past few months things have changed but I am doubtful. My mom , 78, was told she too did not have NPH. The 3rd neurologist stated it was severe arthritis. She’d had two MRIs 6 months apart. 9 months ago my mom was running around Europe for three weeks. The most recent MRI was two weeks ago. The radiologist noted she did not have any increased size in the ventricles in her brain therefore it could not be NPH. I researched and learned as we age our brain shrinks and therefore our ventricles look enlarged so he believed it was due to her age. I brought forward several comparative analysis and the Neurologist agreed to a lumbar puncture. They removed 32 ml from my mom today. Standard amount is 5 ml. My mom was walking without her walker and feeling the need to urinate within three hours. It was like a miracle. Now this will be temporary as the spinal fluid replenishes itself every 4 hours so by tomorrow late date she will be back to square one. We now have hope though as we are moving towards the possibility of a shunt. I do not have too much to share but hope this little bit helps. Feel free to respond. Sending love and strength xo Tracy

      • Cheryl
      • July 3, 2018
      Reply

      Mary your story sounds almost identical to my father who had a stroke March 2017. He had been progressing quite well in recovery, then he began shuffling to walk, lost bladder continence followed 3 weeks ago by bowel continence, and he spent the better part of 3 weeks now with us being told he needs a psychiatric facility or long term memory care facility. He’s been written off as a dementia case and treated as a throw away at only 65 years of age.

      Two days ago he was admitted to the hospital for a massive UTI that his skilled nursing facility failed to get diagnosed once they shut him alone in a room for 2 days, no food, no medication. The hospital neurologist strongly suspects NPH. I honestly didn’t think anyone would ever listen to us that this was NOT dementia, but finally we have a physician who wants to diagnose a condition rather than simply treat symptoms.

      • Regina Fox
      • July 17, 2018
      Reply

      Hi Mary
      I am so sorry to hear of your struggles I have been a nurse for over 23 years now and dealing with a sister who at $56 and misdiagnosed or at least not pushed into sighing the shunt revision I’m very now it has become too late as our national symptoms started 9 years ago but I will do whatever I can and fight and push as hard as I can with these doctors because it’s so unaware there so unaware and I feel that it’s big Pharma take a pill take a pill take a pill when in fact if you do the shunt revision and things improved dramatically it can be life changing my sisters have these symptoms off and on for 9 years because of her quote on quote history of Psych disturbance which who knows maybe that was all related to NPH years ago and no we did a cat-scan they’ve tried every different kind of medication with no avail so I beg of you to Advocate Advocate push-push-push till your herd

      • Mindy F
      • July 21, 2018
      Reply

      I completely understand the frustration! My mom was diagnosed with Parkinson’s a few years ago. She had very mild symptoms. She was still living alone and driving up to a few months ago when we found her laying on the floor in her home. Since then the symptoms have made it impossible for her to live alone. We took her to her neurologist who said that she was suffering from post concussion and that there was no way to test for that. We’re in the process of changing neurologists. She’s in a nursing facility now recovering from a hip fracture. She’s become aggressive in the last few weeks. I’m also interested in how to get a lumbar puncture ordered. The previous doctors have not been helpful.

    • Danielle Greg
    • February 27, 2018
    Reply

    I usually experience inbalance.😔 But I recently started workouts at home for my legs and tummy.Is it safe to continue? Because I feel my headaches might just pop up during the exercise one day!

    But I really need to work on my body too.

    .

  2. Reply

    I recently had an MRI for NPH symptoms. Neurologist reported that there was no indication of stroke or tumor, Yay! Next day the following observation was made:
    Ventriculomegaly out of proportion to central brain atrophy.

    Anybody know what that means? I have an appt on Feb 14.

      • Laura Beauchamp, RN
      • August 11, 2018
      Reply

      It means enlargement of brain ventricles are out of proportion to the “brain shrink” you’ve been experiencing as you age.

  3. Reply

    Hello my husband seems to have a hydrocephalus because of altered gait, nausea, vision and hearing problems. BUT he has also a 16mm pineal cyst. all doctors try not to correlate both facts, but it seems very coincidental because enlarged pineal cysts can cause compression and lead to hydrocephalus. any tip or doctor to refer?

    • Sara
    • January 17, 2018
    Reply

    My mom was diagnosed with NPH in November at 74 and had a shunt placement in mid-December. She has been in in-patient rehab since and has had two shunt adjustments. Everyday is different. Some days it seems like she is getting better and some days it’s worse. She was in the hospital for over a month before the shunt was placed. Even though she’s in therapy everyday she still can’t walk alone. Her balance is poor and she needs someone support. Still struggling with Incontinence and memory problems. It’s now mid January. Is this normal? I wonder how much she will improve. She needs 24 hour care when two months ago she was completely independent.

      • Kait
      • January 29, 2018
      Reply

      My husband had shunt placement in May at age 70. He went immediately to inpatient rehab. His progress was slow and erratic at first. He is now home and in outpatient therapy. The first day I could just about get him from the car to the rehab gym with a walker. Now he can walk without assistance. He even walks our dog. It takes time.

      • Nicolette
      • April 17, 2018
      Reply

      Hi Sara this sounds very similar to my moms story, some good days some bad days, shunt did not change memory, can’t be trusted to walk alone and has nightly accidents, it’s been 8 mths post shunt

    • Kim Danieluk
    • January 5, 2018
    Reply

    My mother was diagnosed with NPH back in 2014. She had shunt surgery and did very well for 2 years. It then stopped working and she had a total revision in December of 2016. We saw no improvement…she then had a partial revision in September 2017 where they cleared out some calcium deposits and moved the tubeing from the peritoneal cavity to her jugular. She has declined rapidly ever since. Her report from her last brain scan stated “chronic moderate ventricularmegaly – no surgical intervention at this time”. Has this happened to anyone else? It worked for 2 years and I got my mom back. Now she needs 24 hour supervision and my dad can no longer take care of her.

    • 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.

      • Tracey Lackey
      • March 7, 2018
      Reply

      Hello Kathryn

      I feel for you in your current situation. I don’t know where you are located but it might be worth a call to see if anyone in your area is familiar with the endoscopic 3rd ventriculostomy procedure. It alleviates the need of a shunt because it is done inside the brain in the 3rd ventricle.

      My husband had the procedure done in Aug of 2015 by Dr. Chu at Cedars Sinai in Beverly Hills, CA. Our insurance covered the entire operation and stay. We had a small copay.

      My husband was diagnosed with hydrocephalus due to a blockage in the aqueduct of silvanus. This is the canal the connects the 3rd and 4th ventricles. He had been told that a shunt might be necessary and chose this procedure instead. His constant severe headaches are gone and his ventricles are normal sized again.

        • Carol
        • April 3, 2018
        Reply

        Thank you for sharing the results. I’ve got the clogged aqueduct and everything that goes with it. Having an ETV on Thursday. Scared yet excited.

        How is your husband now? Got any tips for recovery?

          • Sara
          • October 15, 2018
          Reply

          Hi, how did your surgery go?

      • Victoria Sadowski
      • March 16, 2018
      Reply

      Hi Kathryn,

      I had an ETV procedure done in December 2015 with the Columbia Presbyterian Neurosurgery Group. My surger was performed at Monmouth Medical Center in Long Branch, NJ. Hydroassoc.org has a list of surgeons organized by area for you to choose. Good luck.

  4. 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!

        • Joanne
        • December 22, 2017
        Reply

        Carol thank you so much for your response . Didn’t know that someone had responded . I just happened upon this site and saw my original response .
        My husband has had a bit more improvement. He did have his shunt adjusted in November . Improvement is still slow . It is a relief to hear you say that some days are better than others . It is the same with my husband. Some days he can walk better and other days it’s worse. I guess that this is the nature of this disease. I hope for your continued improvement . Happy holiday!

  5. 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.

      • sunny
      • February 18, 2018
      Reply

      Hi there from houston tx. I had my shunt placed 5 years ago when I was 71 years old. I was 100 % better immediately but it was 2 years before my low abdoman settled down for end of shunt to adhear. Mow I always forget yhe shunt.

    • 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

      • Carol s.
      • April 3, 2018
      Reply

      Can you take her to another neurologist? My mom was misdiagnosed for 7 years and lived in an Alzheimer’s facility until we got her shunted. She awoke from her coma!

    • 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.

            • Joanne
            • December 22, 2017
            Reply

            Thank you for your reply Laurie. It has been about 10 weeks since my husband had his shunt surgery and since I last wrote . He has shown improvement. It is very slow and some days are better than other days. . It’s great that your surgeon explained that not all patients have a quick response because it is a much slower drain than the lumbar drain. Ours didn’t tell us that . It sort of leads you to come to your own conclusions , which are not always good conclusions . Nothing better than communicating with patients or spouses of patients . Thank you . Happy Holidays!

      • 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.

        • Meraiah
        • February 21, 2018
        Reply

        I am 46 and a nurse dealing with killer migraines for more years than I could count and over the last 10 years or so increase gate and memory loss as well as thought process changes and incontinence. All the Doctors attribute headaches to migraines and stress incontinence and bursitis and “I Don’t Know” and depression and Fibromyalgia the perfect non diagnosis in my book. I finally after recently changing primary doctors to one that would listen to me asked directly to a referral to a neurologist not a rheumatologist and he ordered a MRI which showed enlargement of left ventricle. now we see where we go from there.

          • Meraiah
          • February 21, 2018
          Reply

          Oh and I keep getting the I’m to young for this and that,BS . I have had shingles 9 times since I was 27 Age is a guideline not a rule. Always stand up for yourself and tell them not to rule it out just because of that. this might just happen mainly to those over 60 but it does happen to younger people as well just not as often.

      • 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!

          • Carol
          • January 23, 2018
          Reply

          Hi Michael,
          Did you get another shot with Neurology? If so, what was your outcome? I have NPH with a shunt installed in July 2017. I’m older than you (65 yrs.) and was misdiagnosed 20 years ago. In my case, the flow study demonstrated that the shunt surgery may help – and it did, although I have better days than others. Sending you wishes for wellness.

    • 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?

      • Norma Beck, Ph.D.
      • February 23, 2018
      Reply

      HI! I am 86 and had the shunt surgery in July, 2017. No problem! I do have physical therapy 2X week, and made very good progress. HOwever, a few months ago I had a few falls so I’ve resumed physical therapy to work on balance and gait issues. I think the P.T. is VERY important, so do not overlook it. I DO have bladder problems, but I had them starting many years ago.
      If you need help, I am here for you, but I have limited time so email is best. Norma

    • 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?

        • David
        • February 22, 2018
        Reply

        I’m a 75 year man who started having gait and balance two years ago. My Neuro ruled out Parkinson’s after a lot of tests. I did research and found Dr Mark Luciano at Johns Hopkins in a special CSF department. I went to Baltimore for about three months before they decided it was nph and that I had an 80 Percent chance of the shunt working. I got the shunt and and my walking was immediently better. I get tired walking but no falls since. I’m still scared of a shunt malfunction. It’s been six months and so far so good. Good luck to all.

      • 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?

  6. 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

      • Deb Topham
      • July 7, 2018
      Reply

      NPH is underdiagnosed for the same reason so many other diseases are missed or underdiagnosed. Somewhere over the years doctors stopped listening to patients. They are told they are the best and the brightest and they know everything about the human body. They also tend to be ageist and dismiss symptoms of disease, passing it off as aging. It took me 14 physicians and many different geographic destinations in several states before I found a physician who did a complete neuro exam. Prior to that, I’d been told it I was an alcoholic, I needed a psychiatrist, I had an artery pressing a nerve, etc. Keep persisting and pursuing. If a doctor won’t even do the tests or is dismissive, the problem is the doctor – find a new one.

    • 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.

      • Barry Gordon, MD
      • October 21, 2018
      Reply

      I’m a physician, 78 y/o, and I had the exact same symptoms. I had a shunt put in 11 mos ago and had about a 70% improvement. More recently I decided to do ALL the things my neurosurgeon recommended. And now I’ve been 90% – 95% better. Two key additional treatments. 1. Move your bowels every day – whatever you have to do. I take 2 Fiber Well cubes morning and night, and full dose lactulose in the morning and full dose Miralax at night. It lowers the pressure inside the abdomen and allows the fluid to flow more easily. 2. Very important – put 4″ – 5″ blocks under the two head legs of your bed. This allows fluid to drain out all night. Over a period of weeks, these two things led to a major improvement in my symptoms.

    • 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!

  7. 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

  8. 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.

  9. 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?

  10. 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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