Hydrocephalus : Making sense of it all

When I was 15 years old, I contracted viral meningitis – I was in my last year at school and this was just before my last exam.
7 years later, I contracted it again – nearly 3 months after giving birth to my eldest son and before going back to work.

5 years later, I went to see a neurologist about the daily headaches I’d been having for the last couple of years. I can’t really remember when the headaches started but I know they were intense. After a CT scan, I was diagnosed as having Mild Hydrocephalus due to Aqueductal stenosis (AS) and so, my treatment began.

“Aqueductal stenosis is a narrowing of the aqueduct of Sylvius which blocks the flow of cerebrospinal fluid (CSF) in the ventricular system. Blockage of the aqueduct can lead to hydrocephalus, specifically as a common cause of congenital and/or obstructive hydrocephalus.” – Wikipedia

Think of Aqueductal stenosis as a road which has been affected by an earthquake, no longer useable and therefore affects traffic, causing a backup. This backup, in my case, would be cerebrospinal fluid (CSF), which in turn causes the headaches, nausea, vomiting, etc. due to a pressure buildup.

The treatment I received at the time, was the implanting of a Ventriculoperitoneal shunt (VP shunt). It leads from the brain and is fed under the skin, down into the abdomen where the fluid is then diverted to. (See pic below). Think of this as a new road being used to bypass the blockage from the AS.

My shunt was a programmable one and therefore, gave the Neurosurgeon the ability to adjust it from the outside. He does this by means of the device below, which is placed over the bulge (caused by the valve in the top half of the picture, under the skin behind the ear) on the side of the head.  The 3 components in the bottom half of the picture fit on top of each other to form the dial.  Think of this as a tap which you turn open or close and the amount of flow you need to drain is what determines how far open or not you turn the dial (handle).

However, my “plumbing” started giving problems within the first two years, much like a leaky tap or even a tap that won’t turn. Therefore, said blockage reoccurred, very similar to the scenario above and so too did the symptoms of constant and increased nausea, vomiting, headache and dizziness.

After seeing one too many Neurosurgeons and specialists (because the first surgeon refused to believe anything was wrong), I found one who decided that he would replace some of my “plumbing” in a manner of speaking, after performing a lumbar puncture which indicated increased pressure. It was meant to be simple (as simple as can be especially since I was 5.5 months pregnant) but didn’t quite turn out that way…you can read all about it here.

After 2 failed attempts in 2 days, he performed an emergency procedure on the 3rd day, called an Endoscopic Third Ventriculostomy (ETV). The ETV, in my analogy, would be best described as a detour for the CSF to flow through. It’s a little hole drilled, using an endoscope, in the Third ventricle within the brain. This little hole however is not a cure, same as a shunt. It’s not permanent and, in time, can close over, become blocked, etc. and then either needs to be redone or a shunt will be inserted again, depending on the circumstances.

I also developed slit ventricles while my shunt was in and because of this, I’ve been told the likelihood of having another ETV is slim and I would probably be shunted again.  I’ve also been told that I could slip into a coma due to this…But, who knows…  

For now, I’m surviving on love, fresh air and faith(tons of it)…

You can connect with me via any of the following:

E-mail

Twitter

Facebook

Follow my blog and receive posts like this direct to your Inbox

Thank you for taking the time to read.

I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!