Welcome to the Wonderful World of Hydrocephalus: Part 2, The Basics

Let’s cover the basics* this week:

What is hydrocephalus?
Also known as “water in the brain,” hydrocephalus is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain.

Is there a treatment for it?
Yes, there are two types of treatment, both of which require surgical procedures by a neurosurgeon:
• Shunts
• ETV-endoscopic third ventriculostomy

Most people receive shunts as ETVs are only suitable for specific candidates. There are as many shunt manufacturers as are car manufactures. Most likely, your  doctor will determine which shunt to use based on their familiarity with it. I had no idea about this until way after Ellisa’s shunt was placed. I’ll talk more about shunts and how they work in another post.

Once you get a shunt, is that it? Does the shunt control hydrocephalus for life?
Unfortunately not. Yes, the shunt successfully controls hydrocephalus, but one shunt is NOT guaranteed to last a lifetime. Shunts are susceptible to infection and malfunctioning. Shunts are at higher risk for infections within the first month–year of surgery. After 6 months from surgery, your risk of infection is very small. Malfunctions happen most commonly due to blockage. Shunts malfunction more easily at the beginning and end of their lives. A standard shunt’s lifespan is 10 years. This is not to say a shunt won’t last shorter or longer. There are many cases where shunts need multiple revisions within a year and some that last as long as 20+ years.

How often do shunts malfunction?
This is different per person. Some people go years without any malfunctions and some get revisions as often as monthly. Once a shunt is placed or revised, your body naturally creates extra proteins in order to aid in the healing process. Those proteins are more likely to clog shunts. Most revisions happen within a month–year from surgery since that is when your body is healing. That is not to say a shunt won’t malfunction after a year, Ellisa’s got blocked around 19 months, your risk simply goes down after a year since your body is no longer producing the extra proteins.

What is a revision?
A revision is when your shunt malfunctions, and it or parts of it need cleaned and/or replaced.

What are the symptoms of a malfunction?
• Abnormal enlargement of the head (infants)
• Soft spot (fontanel) may be tense and bulging (infants)
• Nausea and vomiting
• Sleepiness
• Irritability
• Downward deviation of the eyes (sun-setting sign)
• Headaches
• Blurred or double vision
• Off balance
• Developmental delays (children)
• Personality change
• Unable to concentrate
• Memory issues
• Problems waking up and staying awake (older children)

Most times symptoms are noticable. Other times–especially with infants or children who can’t communicate–symptoms build up over time and go unnoticed. A parent or guardian needs to be extremely aware of these symptoms.

What happens if symptoms go unnoticed?
If left untreated, a shunt malfunction can cause severe brain damage or at worst death.

If you are the slightest bit concerned that you or your child may be experiencing any signs of a shunt malfunction, do not hesitate to go to the ER. Listen to your instinct. 98% of the time it’s right.

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*Most of my information has come from learning about hydrocephalus myself and also from the links below:
en.wikipedia.org/wiki/Hydrocephalus
www.hydroassoc.org

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