Hydrocephalus and Chiari awareness

As many of you already are aware, one of my children has spina bifida. One fairly common thing with spina bifida is hydrocephalus. Often times, a child who has hydrocephalus will also have a Chiari Malformation.


September is Hydrocephalus and Chiari Awareness Month. I’m going to try to break down a bit of what each thing means!

Hydrocephalus is what it’s called when the ventricles in your head are too big. CSF (CerebroSpinal Fluid) travels through every single person’s body, from the spine to the brain and back again and is absorbed into the blood stream. Normally this is a very good thing, as the CSF protects the brain. It acts as a shock absorber between the brain and the skull. People with hydrocephalus, however, have too much of it flowing through and it creates larger than normal ventricles. Everyone has 4 ventricles and there is a certain group of measurements that are considered “normal” and if the measurements are larger than that it means that the ventricles are pressing on brain tissue and that can cause permanent damage to the brain. 

What is the treatment for hydrocephalus? Well, that depends. Sometimes the treatment is to leave it alone and see how it progresses. Other times the treatment is to use a shunt to drain the fluid to other parts of the body so that it can be absorbed or removed from the body. If a shunt is the treatment, it involves brain surgery to place the shunt into the ventricles to help them to drain. The shunt can malfunction at any time, and that often means another brain surgery to correct it. Many people with shunts will have several brain surgeries through their lives. A shunt malfunction can be dangerous or even deadly.

How common is hydrocephalus? It is estimated that 2:1000 children born have hydrocephalus.

What is a Chiari Malformation? That is when part of your brain is sliding into your spinal canal. This can happen for many different reasons. The malformation can cause headaches, dizziness, unsteady walking, gagging, fast downward eye movements, numbness in hands and arms, trouble with speaking, memory issues, and much more. 

What is the treatment for a Chiari Malformation? Sometimes the treatment is no treatment at all and just monitoring it. Other times they do a surgery where they remove parts of the base of your skull to try to relieve some of the pressure of the skull on the brain. This can help reduce or eliminate symptoms of the malformation. 

Even with successful treatments both of these conditions have lifelong issues associated with them and must be monitored closely. 

How common is Chiari Malformation? It is estimated that 1:1000 children born worldwide have a Chiari malformation. This number is changing all the time due to medical advances that are making this condition much more well known, and therefore diagnosed more often.

As I’m sure you can see, these conditions are not that well known, but can be extremely dangerous conditions. With proper treatment they are manageable but never curable. If you have either of these conditions, you will have them for your entire life. Medical advances are happening all the time, so perhaps in the future there will be ways to reverse these conditions before they become a problem, but at present time there are not.

Until next time…. Take care of yourselves. ~C


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