The message board for Normal Pressure Hydrocephalus was introduced in February 2005 because the profile for NPH differs considerably from other types of hydrocephalus. The purpose of this web site and message board is for patients and family members to learn more about NPH, ask questions, and share personal experiences and advice. The goal is to enable you and your family to make informed decisions. Download and print a TRI-FOLD BROCHURE (PDF) about NPH.
You'll find a link
near the middle of this page that allows you to join
this Yahoo! Health
Group. It is a members only moderated list. Before
joining, we urge you to read about NPH on this page
well as excellent articles linked from the page.
Our members are from
all over the U.S.A. as well as Canada, Australia,
U.K. We've had visits from every state in the U.S. and
many other countries, including Armenia,
Korea (Republic of), India, Ireland,
Jamaica, Japan, Malaysia,
Our hearts and prayers are
for every family who is going through this experience, and especially
for those whose circumstances may prevent them from obtaining the
health care and support they deserve.
In a normal brain, cerebral
fluid flows into and out, with a percentage of fluid being
absorbed in the brain. In a person with
hydrocephalus, Cerebrospinal fluid
begins to build up in the brain, causing
the ventricles of the brain to expand and put pressure on certain
In a case of
Pressure Hydrocephalus, there is no blockage of the flow of fluid
out of the brain, but the fluid is no longer absorbed at the rate
needed. Except for occasional spikes in
pressure, the CSF pressure is "normal". Many neurologists and
neurosurgeons believe that "Normal Pressure Hydrocephalus" is a
misnomer, and instead may refer to the condition as "chronic adult
communicating (non-obstructive) hydrocephalus." As you read
you may need to refer to a GLOSSARY
The symptoms of NORMAL PRESSURE
HYDROCEPHALUS may mimic those of
Alzheimer's, Parkinson's Disease, and other types of Dementia, making
more difficult to diagnose. Although Alzheimer's patients may
eventually develop gait disturbance and incontinence, with Normal
Pressure Hydrocephalus, gait disturbance tends to present first, then incontinence,
and last, dementia. With Alzheimer's Disease, confusion and
dementia are the first symptoms to appear, with other symptoms
developing later in the progression of the disease. Similar
symptoms may appear in Small Vessel Disease, Alzheimer's Disease,
Parkinson's Disease, Dementia With Lewy Bodies, or a number of other
neurological conditions. Dementia and weakness in the arms and
legs may also be caused by medication, vitamin deficiency (such as
B12), or chemical imbalance.
Primarily NPH is seen in adults over
55 (the median age is said to be
mid-70's), and they may have a variety of symptoms caused by more than
one medical condition or disease. Any of the symptoms below
may be caused by other medical and neurological conditions and may not
indicate NPH, OR, a patient may have more than one neurological
disorder. Normal Pressure Hydrocephalus is
estimated to represent 5%-10% of all cases of
The TRIAD of symptoms
Feeling of feet being stuck to the floor (magnetic feet)
Difficulty starting and stopping
Difficulty turning and changing directions
Balance problems (stumbling backward or forward, leaning forward or to the side)
Difficulty getting up and down
Weakness in legs (and sometimes arms)
Inability to walk (advanced stage)
Urgency to get to the bathroom
Note: Bowel incontinence is not as common but also may be a symptom of NPH
Delayed response to questions
Short term memory loss
Difficulty processing and retaining information (including reading, television)
Difficulty following conversation
Mild or Severe Depression
Fatigue and lethargy
Insomnia at night
Sleepiness during the day
Decreased attention to personal hygiene
Severe mental disabilities (advanced stage)
Initial diagnosis may be
done by the family doctor who takes a history of the appearance of
symptoms, observes the patient's gait and cognitive skills, and rules
out other causes of these symptoms. The first clues may be the
order in which the symptoms appeared, and the way in which the patient
answers the doctor's questions.
The next step should be a referral to a neurologist for further
testing, including further cognitive tests and possibly an MRI and CT
scan. Normal Pressure Hydrocephalus may be diagnosed based on
what the scans reveal. It must be noted that other neurological
conditions may cause the enlargement of the ventricles, so tests may be
Based on the patient's history of symptoms (when and in what order they
appeared), observation of the patient's gait and cognitive
function, the results of the scans, and ruling out any other obvious
cause of symptoms, the neurologist may diagnosis NPH and refer
patient to a neurosurgeon. A lumbar drain may assist in
the outcome of installing a programmable shunt. This
requires several days of hospitalization.
recommended treatment for Normal Pressure Hydrocephalus is the
installation of a ventriculoperitoneal
to monitor and
drain the fluid from the brain. The procedure is done under general
anesthesia. A catheter is placed into one lateral ventricle and
attached to a cap and valve positioned below the scalp. Tubing is
tunneled below the skin from the valve to drain into the abdominal
cavity, where it is absorbed by the body. Generally, the
patient will be in the hospital two to three days.
Usually, there is only minor discomfort at the site of the small
incision in the scalp and the abdomen. It takes a little time for
an older person to recover from the general anesthesia and adjust to
the changes in the brain, and this varies from patient to
patient. Improvement may come gradually over a period of months.
There is a risk of infection with any type of surgery. With shunt
surgery, the risk is greatest during the surgery and hospital
stay. An infection in the spinal fluid may not be diagnosed for
several weeks after surgery, and would require the removal of the
shunt, treatment with IV antibiotics for at least ten days, and
replacement of the shunt.
Older people tend to have additional medical conditions such as heart
or lung disease, high blood pressure, diabetes, arthritis, or other
neurological conditions such as Parkinson's Disease or stroke. As
become less mobile, there may be added complications from poor
circulation and infection. As people age, the veins in
the scalp stretch and become thinner, so there is a risk of a hematoma
(bleed), particularly at the site of the valve. It's
important to understand all of the implications of surgery, so be sure
to do your research in advance. Understandably, many doctors are
reluctant to perform surgery on a patient who is not in good health and
does not have a good prognosis for recovery.
Sometimes the shunt may need to be adjusted for proper
drainage, and in an adjustable shunt, this can be done by the
neurosurgeon in the office by using a magnet. Although it's rare,
the valve may malfunction.
The tubing may get
clogged. For some children who live a lifetime with a
complications may occur every several years. For an elderly
patient, it may never happen in his or her lifetime.
The earlier a patient is diagnosed and treated, the better the outcome of surgery. As the condition progresses, putting pressure on brain tissue and nerves, there may be permanent brain injury. Studies have shown that cognitive function improves the least after surgery, with gait and urinary incontinence improving more significantly. If you and your loved one decide on surgery, try to have realistic expectations.
You may see subtle improvement over many months, or dramatic improvement in days. Some symptoms may improve more than others. Most experts agree that the symptom most likely to improve is gait, and the least likely is cognitive function. Patients who have symptoms from other medical conditions may not experience a dramatic improvement. Most of us who have been through the process would say, "Just appreciate each day and every small miracle."
TYPES OF HYDROCEPHALUS
AS DEFINED BY THE HYDROCEPHALUS ASSOCIATION
HOW NPH IN OLDER ADULTS MAY DIFFER IN SYMPTOMS
These are simply my observations based on personal experiences, research, and encounters with other NPH patients and families. Be aware that a patient with Normal Pressure Hydrocephalus also may have symptoms from other medical conditions. Some of the ways NPH symptoms of older patients (60's-80's) appear to differ from other similar conditions:
You'll find LINKS below to excellent information about Normal Pressure Hydrocephalus and related conditions.
Join the Discussion Group! This Yahoo Health Group is listed under "SENIORS HEALTH". If you would like to share information, experiences, or learn more about Normal Pressure Hydrocephalus, you are welcome to join this group. Before joining, please visit the HYDROCEPHALUS ASSOCIATION to determine whether this group is the most appropriate to meet your needs. There are many message boards and lists for the discussion of congenital and adult hydrocephalus. This is the only board exclusively for the discussion of adult onset NORMAL PRESSURE HYDROCEPHALUS.
The purpose of this group is to share information and lend support to patients and families. Anyone seeking information and support is welcome to participate or just lurk. It is a very active list, so if you do not want a lot of individual list e-mails, you may select the option to read messages on the web.
Visit the Yahoo Groups Message Board for NPH_Friends:
Thank you, Debbi Fields, Director of National Hydrocephalus Foundation, for being our Group ANGEL!
So many have benefitted from your information and advice!
Helpful Online VIDEOS at YouTube
Personal Stories of NPH
Shunt & Surgical Information
Additional Information About Dementia & Diseases of Aging
Dementia (Main Page) - E-Medicine - Excellent explanations about causes and symptoms of Dementia
Disclaimer: All information included on this site is believed to be accurate but is not guaranteed. Each case of NPH is different. This Yahoo Group is independent from any organization, and is offered as an opportunity to learn and share information about Normal Pressure Hydrocephalus. Members and owners are not medically trained and make no claim to be such, do not intend to advise or otherwise act as medical professionals. This website disclaims any and all liability for injury or other damages that could result from use of the information obtained from this site.
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