Hydrocephalus Facts

  • Non-communicating hydrocephalus, also known as obstructive hydrocephalus, occurs when the flow of cerebrospinal fluid (CSF) is blocked along one or more of the narrow passageways that connect the ventricles within the brain. 

  • Normal Pressure Hydrocephalus (NPH) is an abnormal accumulation of cerebrospinal fluid (CSF) that causes the ventricles in the brain to become enlarged, sometimes with little or no increase in intracranial pressure (ICP).

  • The only treatment for hydrocephalus is brain surgery where a shunt is placed to drain the excess spinal fluid.  New techniques like Endoscopic Third Ventriculostomy (ETV) with Choroid Plexus Cauterization (CPC), are starting to come forward but few surgeons in the country are trained to do so.

  • The primary treatment uses a device (shunt) developed fifty years ago that has one of the highest failure rates of any surgical treatment.

  • Reef's VP shunts are tubes placed through the skull and into a ventricle in his brain.  The tubes are connected to a valve which regulates the spinal fluid buildup.  A tube is connected to the valve and goes behind his ear, across his chest, and coils into his abdomen where the spinal fluid can be reabsorbed.

  • A shunt malfunction can happen at any time.

  • There are approximately 10,000 pediatric hospital admissions for shunt malfunctions each year.

  • 36,000 hydrocephalus operations are performed annually.  That’s one every 15 minutes.

  • The medical costs of treating hydrocephalus are over $2 billion per year, yet the National Institutes of Health (NIH) invest less than $1 million per year in hydrocephalus treatment.

  • Hydrocephalus and a shunt can mean a lifetime of multiple brain surgeries. Dozens of brain surgeries are common and 100 or more brain surgeries is not unheard of.

  • 25-30% of preemies with brain bleeds will develop hydrocephalus.

  • Nearly 40% of infants diagnosed with hydrocephalus develop behavioral issues and 20% will develop autism.

  • Hydrocephalus is the most common reason for brain surgery in children.

  • 1,000,000+ Americans live with Hydrocephalus

  • 1-2 in 1,000 infants are born with Hydrocephalus

  • 1 in 100 seniors develop normal pressure hydrocephalus, which is often confused with Alzheimer’s

  • 1 in 10 dementia patients have normal pressure hydrocephalus, but may never be diagnosed

  • NPH is often misdiagnosed as Alzheimer’s or Parkinson’s because of the triad of symptoms: mild dementia, impaired bladder control, gait disturbance.

  • An estimated 700,000 older Americans are believed to have NPH, but often are misdiagnosed as Alzheimer’s, Parkinson’s or dementia. When correctly diagnosed and treated the patient often can return to full functioning!

  • 80% of all shunts fail, 50% of those fail in the first 2 years of placement.

  • A child will on average have 2-3 shunt replacements during their childhood.

  • Hydrocephalus can only be treated with BRAIN SURGERY, and there is currently NO CURE.

  • September is Hydrocephalus Awareness Month

  • 60% of children with hydrocephalus will not be independent as adults

  • It really IS brain surgery, but it shouldn’t have to be.