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Normal Pressure Hydrocehalus NPH Info and Message Board


INTRODUCTION

     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 as well as excellent articles linked from the page.

     Our  members are from all over the U.S.A. as well as Canada, Australia,  Spain, and the U.K.  We've had visits from every state in the U.S. and many other countries, including Armenia, Australia, Bahamas, Brazil, Canada, China, Cyprus, Denmark, Finland, France, Hong Kong, Hungary, Korea (Republic of), India, Ireland, Israel, Italy, Jamaica, Japan, Malaysia, Mexico, New Zealand, Netherlands, Nigeria, Norway, Philippines, Russian Federation, South Africa, Spain, Switzerland, Taiwan, Thailand, Turkey, United Kingdom and Zimbabwe.   

     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.


WHAT IS NORMAL PRESSURE HYDROCEPHALUS?

    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 (CSF) begins to build up in the brain, causing the ventricles of the brain to expand and put pressure on certain nerves. 

    In a case of Normal 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 onset communicating (non-obstructive) hydrocephalus."   As you read about NPH, you may need to refer to a GLOSSARY OF TERMS.


THE SYMPTOMS OF NPH

     The symptoms of NORMAL PRESSURE HYDROCEPHALUS may mimic those of Alzheimer's, Parkinson's Disease, and other types of Dementia, making NPH 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 dementia. 


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      The TRIAD  of symptoms for NPH:

  • GAIT DISTURBANCE   which may include:
Feeling of feet being stuck to the floor (magnetic feet)
Shuffling walk
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
Sudden falls
Weakness in legs (and sometimes arms)
Inability to walk (advanced stage)
  • URINARY URGENCY OR INCONTINENCE   which may include:
Urgency to get to the bathroom
Frequent urination
Accidents
Urinary Incontinence

Note:  Bowel incontinence is not as common but also may be a symptom of NPH
  • DEMENTIA which may include:
Delayed response to questions
Short term memory loss
Difficulty processing and retaining information (including reading, television)
Difficulty following conversation
Confusion
Mild or Severe Depression
Fatigue and lethargy

Insomnia at night
Sleepiness during the day
Decreased attention to personal hygiene
Severe mental disabilities (advanced stage)


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DIAGNOSIS

    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 inconclusive. 

    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 the patient to a neurosurgeon.  A lumbar drain may assist in predicting the outcome of installing a programmable shunt.    This requires several days of hospitalization.

TREATMENT

    Typically, the recommended treatment for Normal Pressure Hydrocephalus is the installation of a ventriculoperitoneal shunt 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.

RISKS  
    
     For a person with Normal Pressure Hydrocephalus, the only recommended treatment is the installation of a shunt to relieve the pressure and monitor the drainage of fluid from the brain.  Without surgery, the symptoms will continue to worsen.  However, it is important for the patient and the family to understand the risks. 

     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 they 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 shunt, complications may occur every several years.  For an elderly patient, it may never happen in his or her lifetime.

RESULTS

     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."




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TYPES OF HYDROCEPHALUS
AS DEFINED BY THE HYDROCEPHALUS ASSOCIATION

  • Pre-Natal Hydrocephalus (diagnosed in utero)
  • Hydrocephalus in Infants and Children (from a variety of causes)
  • Hydrocephalus in Young and Middle-Aged Adults  (SHYMA)
  • Adult-Onset Normal Pressure Hydrocephalus (NPH)
Please note:   Nothing about hydrocephalus is clearly defined, as it may have a number of causes.   You may see hydrocephalus categorized differently by doctors and medical centers.

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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:


  • HYDROCEPHALUS IN YOUNGER AND MIDDLE AGED ADULTS.  Older patients with NPH appear not to have feelings of pain and pressure, headaches, or double vision as their condition progresses and symptoms increase, as may be common in young and middle aged adults with hydrocephalus.  A feeling of dizziness does not appear to be common in older patients with NPH, even prior to a fall.
  • PARKINSON'S DISEASE.   Older patients with NPH appear not to have involuntary movements, tremors, tingling or pain in the hands and feet, or numbness associated with Parkinson's Disease or other neurological conditions.  However, a feeling of weakness in the arms and legs, and stiffness in gait is not uncommon for NPH.  Early Parkinson's Disease may closely resemble early Normal Pressure Hydrocephalus.
  • ALZHEIMER'S DISEASE.    The first symptom to appear in Alzheimer's Disease is mild dementia, while gait disturbance and urinary or bowel incontinence may appear in late stage Alzheimer's. Older patients with  NPH appear not to experience dramatic personality changes, obsessive behavior, hallucinations, violent or paranoid behavior as may be present in later stages of Alzheimer's or other types of dementia, such as Lewy Bodies.  However, confusion and depression  are common with both NPH and Alzheimer's.   Keep in mind that these symptoms  also can be caused by other neurological or general health problems or medication!   (See link below to E-Medicine's descriptions of different kinds of dementia).  Late stage Alzheimer's patients may develop hydrocephalus as fluid fills space created as  the brain shrinks in size.  This is not Normal Pressure Hydrocephalus, which is an accumulation of fluid in the ventricles of the brain, causing pressure on brain tissue and nerves.
  • STOKE or TIA.   Older patients with NPH experience a slow progression of symptoms, often over a period of years, as the ventricles stretch and enlarge, pressing on surrounding areas of the brain. In a TIA (transient ischemic attack ) or stroke, a seemingly  healthy person may experience sudden acute symptoms of a severe headache, numbness in the face or one side of the body, slurred or halted speech, blurred vision,  incontinence, or collapse.   According to some studies, urinary incontinence is common in patients after a stroke, with 40% of patients over 75 experiencing incontinence in the days after a stroke, and most patients gradually improving after two years.   NOTE:  Small vessel disease may cause more gradual symptoms.
  • DEMENTIA WITH LEWY BODIES.  Older patients with adult onset Hydrocephalus typically show symptoms of gait disturbance first, followed by urinary incontinence and mild confusion. As it advances, short term memory loss may become permanent.  Lewy Body Disease resembles Alzheimer's Disease in many ways, beginning with mild confusion and forgetfulness.  Aphasia  is common with Lewy Body Disease, and as time passes,  patients may  become less able to express themselves verbally. Sentences may come out with the words in the wrong order, or it may come out as gibberish.  The patient may become unable to read, write, or do math.  Confusion, along with delusions and hallucinations are common with Lewy Body Disease. Short and long term memory may be equally affected, with  some retained and some lost. As with late state Alzheimer's Disease, mobility, muscle rigidity, incontinence, and loss of language and cognitive function become profound.   Lewy Body Disease currently is not curable.


You'll find LINKS below to excellent  information about Normal  Pressure Hydrocephalus and related conditions.  

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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: 
http://health.groups.yahoo.com/group/NPH_Friends/

 
Subscribe to NPH_Friends
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Links for Information on
  NPH
and Similar Disorders


  • Management of Normal Pressure Hydrocephalus - American Academy of Family Physicians -  Excellent explanations and images!  Read this first!  This article does a great job of describing some of the differences between Alzheimer's and NPH, and also discusses the diagnostic tests in depth. (READ FIRST)


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HYDROCEPHALUS ORGANIZATIONS

           Thank you,  Debbi Fields, Director of National Hydrocephalus Foundation,  for being our Group ANGEL!  
           So many have benefitted from your information and advice!


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  • "A Reversible Dementia" Online Conference  : Diagnosis and Management of Normal Pressure, (Archived Web Conference) by D. Rigamonti and M. A. Williams of Johns Hopkins. Note: you must register to view this multi-media presentation. Turn off pop-up ad blockers. You may need to update your Real Player or Windows Media Player.

Shunt & Surgical Information


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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