Learn About Hydrocephalus

What is Hydrocephalus?

The term hydrocephalus comes from the Greek words “hydro,” which means water, and “cephalus,” meaning head. Simply put, hydrocephalus is excessive accumulation of fluid in the brain. While once known as “water on the brain,” the “water” is actually cerebrospinal fluid (CFS). The excessive accumulation of cerebrospinal fluid (CSF) results in an abnormal widening of spaces in the brain called ventricles. This widening creates potential harmful pressure on the tissues of the brain. Normally, the CSF flows through the ventricles, exits into cavities at the base of the brain, bathes the surface of the brain and spinal cord, and is then reabsorbed into the blood stream.

CSF has important life-sustaining functions, such as acting as a shock absorber for the brain and delivering nutrients to and carrying waste away from the brain. When the production of CSF versus consumption is out of balance, the over-accumulation of CSF in the brain causes pressure against the brain tissue. This condition is known as hydrocephalus.

Credit: http://www.ninds.nih.gov/disorders/
hydrocephalus/detail_hydrocephalus.html

How Many People Have Hydrocephalus?

The National Institutes for Health which controls most of the federal funding for these types of conditions, states that the number of people who develop Hydrocephalus or who are currently living with it is difficult to establish since there is no national registry or database of people with the condition. However, experts estimate that Hydrocephalus affects approximately 1 in every 500 children, which make Hydrocephalus as common as Down’s Syndrome and Juvenile Diabetes, yet the public is largely unaware of the condition.

Credits: http://www.ninds.nih.gov/disorders/hydrocephalus/detail_
hydrocephalus.htm#131713125; http://www.healthscopemag.com/March_2009/Juvenile_
Diabetes.aspx;
http://emedicine.medscape.com/article/1200824-overview

How is Hydrocephalus Treated?

Just over 50 years ago, the prognosis of hydrocephalus was truly devastating. Because there were few treatment options available, and the experiments being used to treat the condition had extremely high mortality rates, hydrocephalus often went untreated. Barely 50% of individuals who had hydrocephalus survived 10 years. More than two-thirds had serious intellectual impairments. Most patients were not offered treatment, and only 20% of children reached adulthood.

The development that ushered in the modern era of hydrocephalus surgery was the introduction of valve-regulated shunts and biocompatible synthetic materials.

The most common treatment for hydrocephalus—and the most common procedure performed by pediatric neurosurgeons in the United States—is the surgical implantation of a shunt. A flexible tube and valve system, a shunt drains cerebrospinal fluid from the brain to another part of the body, commonly the peritoneal cavity. The system continuously performs its function of diverting the CSF away from the brain, thereby keeping the intracranial pressure within normal limits.

The modern shunt system was developed in 1956 by a father, John Holter, working with the neurosurgeon who was trying to save John’s newborn son’s life. The same basic shunt system is used to treat hydrocephalus today. There is a shunt-related operation for hydrocephalus performed roughly every 15 minutes in the United States and those operations cost over $1 billion a year. 70% of those shunt-related operations are for shunts that are malfunctioning. Unfortunately, 50% of shunted individuals require a shunt revision within two years.

While the impact of shunting has increased the 10 year survival rate of children with hydrocephalus to 95%, close to one-third still show some intellectual impairment. Because of the survival rate of those who are shunted, much of the scientific community has become complacent with this procedure to treat the condition. However, shunt dependency is a continued problem.

Despite improvements in mortality and intellectual deficits, shunt dependency and shunt malfunction rates often cause a deteriorated standard of living, with frequent shunt revisions being the rule for most hydrocephalic children. Most children are shunt dependent after they are shunted, and the saying “once a shunt, always a shunt” is true for the majority of these children.

Currently, shunting is one of the basic neurosurgical procedures but also has one of the highest failure rates. It has a high complication rate and is probably the most common operation which has to be redone for either malfunction or infection.

Credits:

http://medgadget.com/archives/2005/07/water_on_the_
br.html

http://www.srhsb.org/achievements/an-appreciation-of-john-holter.aspx

http://www.virtualtrials.com/shunts.cfm

http://www.medscape.com/viewarticle/405733

http://www.hydroassoc.org/education-support/learning-about-hydrcephalus/treatment-of-hydrocephalus/

http://www.aans.org/Patient%20Information/Conditions
%20and%20Treatments/Hydrocephalus.aspx

Facts About Hydrocephalus

Approximately 1 million people have hydrocephalus in the US.
There are believed to be 180 different causes.
There is no cure and very little research. The NIH spends 60 cents per person with hydrocephalus per year compared to $300 per person per year with Juvenile Diabetes though the prevalence of each is the same.
The standard treatment, a shunt, was developed in 1956 and has a 50% failure rate after just two years which is the reason so many have to have multiple brain surgeries just to stay alive.
60% of children with hydrocephalus are not independent as adults and require assistance.
50% of children with hydrocephalus score 80 or below on standardized intelligence tests.
It costs the United States $1 billion per year in health care costs to treat hydrocephalus.

Research for this condition is essential. It is our goal to increase the public’s awareness and raise funds for research for the causes of and better treatments for hydrocephalus.

Credit: http://www.hydroresearch.org/pages/hydro_what.html

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The Hydrocephalus Research Fund was created by the parents, Corby and Reina Bell, of two children with hydrocephalus. When our son, Jace, was diagnosed with hydrocephalus at two week’s old, we had never heard of the condition. I just remember our pediatrician

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