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| My Hydro Warrior, Jonathan |
Jonathan's Hydrocephalus Story
Jonathan
was born with Aqueductal Stenosis and Chiari Malformation Type 1. Both
conditions are brain abnormalities that happen during development in the
womb before birth that cause congenital hydrocephalus, commonly known
as "water on the brain". The only treatment for this condition is the
insertion of a shunt into the brain. A shunt consists of some kind of
regulating hardware, like a valve,
either a programmable or fixed pressure, with 2 catheters, the proximal
that goes into the ventricles of the brain, and the distal, that ends in
the peritoneal cavity in the abdomen (VP shunt) or into the aorta of
the heart (VA shunt), both connects to the shunt valve. Jonathan has a
VP shunt with a programmable valve. Sometimes there is another piece of
hardware needed to help the valve control the flow of the CSF
(cerebral-spinal fluid). For Jonathan, that is a gravity compensator
that "closes" when he is upright to slow down the flow of fluid through
the shunt, and "opens" when he is laying down to help it drain a little
more. Since Jonathan was about a year and a half old, up until today, he
has had 74 surgeries for his shunt, including the first placement of it at
17mos old. He is now 23yrs old. He has also had 2 surgeries, called
Decompressions, to correct the Chiari Malformation, which is a condition
where the cerebellum of the brain is herniated down into the spinal
cord through the small opening at the back base of the skull. His first
decompression was in June of 1994, when he was 23mos old, and the 2nd was just in May of
2014, when he was 21yrs old, almost 22. The Aqueductal Stenosis is a
narrowing of a "tube" in the brain call the Aqueduct of Sylvus that is
between the 3rd and 4th ventricles causing it almost impossible for the
CSF to flow through causing a build up of fluid in the brain.
All of these surgeries are considered to be brain surgery and as of 11-05-15, at the age of 23 years old, between the shunt and the Chiari, he has had a total of 76 brain surgeries. This is why we need Hydrocephalus awareness and research for better treatment for this condition.
(On top of all of that, he also has Asperger's Syndrome.)
All of these surgeries are considered to be brain surgery and as of 11-05-15, at the age of 23 years old, between the shunt and the Chiari, he has had a total of 76 brain surgeries. This is why we need Hydrocephalus awareness and research for better treatment for this condition.
(On top of all of that, he also has Asperger's Syndrome.)
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