Normal Pressure Hydrocephalus

Question:

What were the symptoms of your normal pressure hydrocephalus? Submit Your Comment

Comment from: Husband with NPH , 65-74 Male (Caregiver) Published: October 20

My husband’s symptoms of normal pressure hydrocephalus are very poor mobility (feet seem glued to the floor), severe incontinence and more recently short term memory loss.

Comment from: burlington, 75 or over Male (Caregiver) Published: March 03

My husband 's CAT scan indicates normal pressure hydrocephalus (NPH). He can walk a straight line inside the house without a cane with some difficulty turning around. However, if he is outside, or in a building that is not home, he needs a cane, his feet 'stick' to the floor and needs to stop frequently. Wonder if anyone else has had this issue. He also has incontinence and short term memory issues.

Comment from: martin, 45-54 Male (Patient) Published: January 31

I am 54 year old male and have normal pressure hydrocephalus (NPH). Back in October 2017 I had a VP (ventriculoperitoneal) shunt fitted. My symptoms before this were short term memory loss, urinary problems, and my walk was if I was falling, feet stuck in mud; my brain couldn't tell my feet to move. No one knows how I got this. Operation seems successful at the moment but it is early days. I feel very tired all the time, and my memory still seems poor, but I don't have the walk problem at the moment; fingers crossed.

Comment from: George Elder, 65-74 Male (Patient) Published: August 16

I wrote a comment regarding normal pressure hydrocephalus (NPH) symptoms that was published on May 31 of this year. I just stumbled on this site this morning, and read that comment. There is absolutely no recollection of writing it. The words and tone sound like my prose, but there is no recall. I request that the board monitors affix this post to that one because it might better describe what some of the symptoms are like. I am not sure that I have NPH, but I am dismayed by what is happening to me. It is frightening. There is also increasing emotional liability. But I go the Mass General hospital in September, so perhaps something can be done. As it stands, I am slip-sliding away.

Comment from: George Elder, 65-74 Male (Patient) Published: May 31

In 1994 I was diagnosed with multi-system atrophy (MSA) based on clumsiness and MRI scan results. This diagnosis was recently overturned and they now feel the MRI atrophic changes, enlarged ventricles, etc., are more indicative of normal pressure hydrocephalus (NPH). I am going in for further testing, but I am unsure whom to believe. My left side is getting weaker and I am very clumsy, having suffered falls and the like. Walking is very difficult, but I am trying rehabilitation because I think it important to keep moving. But the hip and leg muscles tire easily and get very stiff. Yet one must try. I urinate about 15 times during any 24 hour period, and cannot easily recall names, faces, appointments, dates, and other episodic memory information. I sleep about 10 to 12 hours per day, and often wake up exhausted. If the tentative NPH diagnosis is correct, I have serious coronary issues that might prevent a shunt from being inserted. The problem with all these neurological conditions is that they are terribly difficult to diagnose, and the patient is often yanked from one erroneous diagnosis to another, which plays hell with anyone on a psychological basis. I have faith that medicine is evolving, but it still has some way to go. I am not at all sure what to do, and fear the loss of cognitive functions will make such decision-making problematic. Yet the loss of faith I am feeling in neurology in general is my greatest concern. There is simply no trust.

Comment from: Lori, 55-64 Female (Patient) Published: February 01

Despite feeling vaguely 'not myself', it was not until I had trouble getting my left leg to cooperate during a walk, that my doctor ordered an MRI. It was then that my normal pressure hydrocephalus was discovered, which resulted from sarcoidosis. It was diagnosed as neurosarcoidosis. The granulomas had blocked my right ventricle, causing a build-up of cerebrospinal fluid. As a result I now have a VP (ventriculoperitoneal) shunt, and memory problems.

Comment from: Jean, 65-74 Female (Patient) Published: February 26

I started to feel off balance 4 years ago. I had an MRI and was diagnosed with normal pressure hydrocephalus. I was around 68 at the time. I had the shunt surgery 2 and a half years ago and it much improved my gait and the urinary incontinence somewhat. Now, at the age of 71, gait seems to have somewhat worsened and also sometimes I cannot control my bowels. What I hate the most is the constant feeling of being very tired and always just wanting to sleep. I feel very guilty about spending so much time in bed! There is problem also with my short term memory at times and confusion. Often I can't remember where I parked at store parking lots. I hate it with a passion! I especially miss dancing which I so loved to do most of my life! Husband not being very supportive or sympathetic doesn't help much either. I'm just so thankful for my daughter and 2 years old grandson. They're about all that keeps me going.

Comment from: me, 65-74 Male (Caregiver) Published: October 30

Twenty five years ago my husband had a ruptured aneurysm ensuing which shunt was placed. Over the past couple years I noticed first his gait getting bad. Then his cognition. I feared he was headed to early dementia and finally got an appointment with a neurosurgeon who told me his shunt had failed! Some more of his symptoms of his hydrocephalus included recent incontinence and very, very slow thinking. I'm wondering if loss of libido is tied in to all this. The recent shunt revision has evidently failed also and he is, tomorrow the 29th, headed for a second surgery to find out what's going on.

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Comment from: booklet, 75 or over Male (Patient) Published: August 27

With my normal pressure hydrocephalus I have tiredness a lot of the days, and my energy level is low. I have been taking various exercise classes, the latest being tai chi. I believe these classes have helped somewhat with my balance, but for sure I have not returned to pre-symptom stage, unfortunately. One of the medications I take is an antidepressant. With all of the side effects that medications have you have to wonder if they are helping or hindering. Good luck.

Comment from: Caron, 75 or over Male (Caregiver) Published: August 24

My father (84) was recently presumed to have NPH. We had been led to believe that his condition was normal deterioration due to age. He had the foot stuck to the floor symptom long before he got incontinence (blamed on his prostrate) and confusion (blamed on old age) One morning he couldn't get up and saw a new physician in emergency who put the combination of Parkinson’s-like symptoms together with the sudden dementia - as a stranger he noticed that my father was not "out of it", he was just a good few beats behind everyone else. He did a lumbar puncture and we noticed immediate improvement in speech and motor skills, although definitely not a recovery and although every joint and muscle could be operated independently his mind could not put them all together to walk. He was offered the shunt operation, but refused due to the high risk of stroke. He's now in a nursing home and has to be hauled in and out of bed by a hoist and wheeled everywhere. As early as his 60's and 70's dad complained of it being hard to get his feet moving after resting. I wonder whether these were early signs of an impending problem.

Comment from: len, 65-74 Male (Patient) Published: March 01

I was diagnosed with adult onset of normal pressure hydrocephalus (NPH). It took almost two years of testing and appointments to suggest that I might have NPH. I went to for the three day lumbar puncture. The doctor asked me to get up and walk. It was like having wings on my feet. I flew through the hallways with ease and speed. I was taken to the area where I was physically tested for my impairments caused by NPH. I was put through a battery of test for movement, speed and agility. I improved dramatically. I had the shunt placement and the doctor said to me, that I will never feel like that again.

Comment from: Otis, 75 or over Female (Patient) Published: June 10

Inability to hold urine and blurred vision.

Comment from: bhilli7502, 65-74 Male (Caregiver) Published: December 27

My husband is 70 years old. Three years ago he had lung cancer and had surgery to remove the upper portion of his lung. After the surgery he had problems with confusion and his gait was terrible. The family and I associated this to the severe pain he has 24 hours a day from the surgery. It has been over 3 years and he still has this gait and never any relief from his pain. He fell last year and was hospitalized. After several tests he has been told he has normal pressure hydrocephalus. He never had any confusion, walking or breathing issues until he had the major lung surgery. The doctor in the hospital said it appears he may have had several mini strokes previously. We are trying to get his weight up prior to discussing the possibility of a stint surgery. He weighed 209 pounds prior to the cancer surgery. He has had pneumonia three times this year and now he is down to 150 lbs.

Comment from: grapada, 65-74 Male (Patient) Published: October 30

*Unexplained falls, balance problems, fuzzy head, urinary problems

Comment from: Michelle E, 45-54 Female (Patient) Published: February 15

I was diagnosed at 33 years of age. I suffer from migraines and during a particularly bad one a CT scan was ordered. An abnormality was discovered, neurologist consulted and the case was turned over to a neurosurgeon who ordered both an MRI and MRA. I've had the spinal tap but no immediate relief was found. I've subsequent follow-ups over the years (now 46) and feel I've been symptom free. However I am beginning to suspect early signs with being able to extract thoughts, memory loss and some balance issues.

Comment from: Singer, 65-74 Female (Patient) Published: January 27

The biggest and most annoying symptom was incontinence. When I'd drink a glass of water or coffee or wine, within a few minutes it would pour out with no warning. Even using the largest pads available I still wet my pants a couple times a day. I had bladder sling surgery, took a few different pills, used a vaginal cream, and changed my diet but nothing seemed to help. I also had a symptom of falling and stumbling when I walked. I had what is called festination, taking lots of tiny shuffling-type steps that were very quick. I could not stop when I'd get going fast. The third symptom was that my mind seemed to shut down frequently. Sometimes in the middle of a sentence during a normal conversation with a friend my mind would simply STOP and I couldn't finish what I was saying. This was much more serious than a "senior moment". I started to lose my car in the grocery store parking lot nearly every time I'd go. The last symptom was a feeling of overwhelming fatigue. I felt very tired ALL the time. Reading the morning paper with a cup of coffee was nearly impossible, as I'd fall asleep before I'd finish the first page.

Comment from: Joan, 75 or over Female (Caregiver) Published: September 12

My wife of 55 years was diagnosed with NPH at 73 years of age, could not move her feet, was falling a lot, and had trouble focusing on anything. She had shunt surgery and could walk again but severe dementia set in and she was troubled with pain in the area of the shunt. It was not severe, just annoying to say the least. She could not longer drive, and dementia set in giving her the diagnosis of possible early onset Alzheimer’s, possibly. Her short term memory became a severe problem and we are currently living one day at a time without much hope of things getting any better. At least she can now walk, with the assistance of a roll-around walker.

Comment from: Maureen, 65-74 Female (Patient) Published: August 11

At age 61 I started to develop gait problems, this got worse with all the other symptoms including falls, for 5 years. It took that long for a diagnosis. Finally after an MRI the condition was found and I had surgery with a ventriculoperitoneal shunt. Three years of physio and I am now back to normal. I lost 8 years to this condition.

Comment from: 65-74 Female (Patient) Published: February 22

With my normal pressure hydrocephalus, I had unsteadiness, wide gait stance, and the sensation that feet were glued to the floor.

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