Below are answers to some of the most frequently asked questions about hydrocephalus.
Q. What is hydrocephalus?
A. Hydrocephalus is the medical term for a condition that is commonly called “water on the brain.” It is a combination of the Greek word “hydro,” which means water and “cephalus” which means head. But the liquid involved in hydrocephalus is not really water at all, it is cerebrospinal fluid or CSF. Hydrocephalus occurs when the delicate balance of CSF production and absorption is disrupted and CSF builds up within cavities called ventricles inside the brain. This build-up of CSF causes the brain to swell, and for pressure to increase inside the skull, resulting in nerve damage. If hydrocephalus is present before or at birth, it is called congenital hydrocephalus.
Q. What causes hydrocephalus?
A. Hydrocephalus can be caused by a variety of medical problems including birth defects, infections before birth, and malformations within the brain. However, most of the mechanisms and possible causes of hydrocephalus are still mostly unknown or under investigation. Many cases of hydrocephalus are thought to be caused by a complex interaction of genetic and environment factors.
Q. How many people have hydrocephalus?
A. The exact number of people who get hydrocephalus is unknown. When cases of spina bifida are included, congenital hydrocephalus (hydrocephalus that is present before or at birth) occurs in as many as 2 to 5 births per 1000 births. The number of people who get hydrocephalus later in life due to something preventing the cerebrospinal fluid in the brain from draining properly (called acquired hydrocephalus) is not known. It is likely that tens of thousands of people in the US have some type of hydrocephalus.
Q. How is hydrocephalus diagnosed before birth?
A. Healthcare professionals usually perform ultrasound examinations of pregnant women to see how the fetus is developing. An ultrasound is a test that uses high frequency sound waves to create a “picture” of the fetus in the womb. During an ultrasound, the healthcare professional looks at many things, including the developing brain and spine of the fetus. Hydrocephalus can be diagnosed as early as 13 weeks gestation. Although abnormal changes in the ventricles of the brain are easier to see at 20 to 24 weeks gestation.
Q. How is hydrocephalus treated?
A. Although hydrocephalus cannot be cured or prevented, effective treatments are available to help people with hydrocephalus live happy, productive, and fulfilling lives. The most effective treatment for hydrocephalus is the surgical placement of a tube called a shunt. Shunts are used to draw excess cerebrospinal fluid (CSF) away from the brain and into another area of the body where it can be absorbed.
Q. What is a shunt?
A. A shunt is a narrow tube that allows excess cerebrospinal fluid (CSF) that has built-up inside the brain to drain out into another part of the body, such as the heart or abdomen (belly). To drain excess CSF, shunts are inserted into an opening or pouch inside the brain called a ventricle, just above where the blockage is that is preventing the CSF from flowing properly.
Q. Are there drug treatments for hydrocephalus?
A. Although there are currently no drugs for the treatment of hydrocephalus, some medications have been used to help alleviate certain symptoms associated to hydrocephalus. You should discuss this option with your physician.
Q. Which kind of doctor should I talk to about hydrocephalus?
A. A neurologist or a neurosurgeon is the right kind of doctor to talk to about hydrocephalus. Most neurosurgeons and their clinics are able to care for people with hydrocephalus from diagnosis through shunt surgery and beyond. Many people with hydrocephalus have a team of healthcare professionals helping them, including neurosurgeons, neurologists, and nurses. Some neurosurgeons specialize in pediatric neurosurgery, and work mainly with babies and children with hydrocephalus.
Q. Who should I contact to help me further with questions about hydrocephalus?
A. Neurologists and neurosurgeons are highly qualified to answer your questions about hydrocephalus. If you do not have a neurosurgeon, click here to search the HYDROKIDS™ Find a Physician database. You can also get helpful information from support groups and organizations, and talk to parents or kids about their experience with hydrocephalus by clicking here to visit the HYDROKIDS™ Support Center.
Q. What is NPH?
A. NPH stands for Normal Pressure Hydrocephalus, which is a type of hydrocephalus that does not affect kids. NPH occurs most often in people over the age of 60. It affects up to 250,000 Americans, and may be the cause of dementia in 5% to 10% of all cases. Unlike congenital hydrocephalus, which is diagnosed before or at birth, NPH develops slowly over time and often goes un- or misdiagnosed. Click here for more information about NPH.
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