Sunday, April 10, 2011

VNS: Changing Lives, One Shock at a Time

Two years ago today a little three inch device saved my life.  I had my VNS surgery on April 10, 2009.  Last year I wrote this, and it still says it best:

one year ago

One year ago my life changed forever.  In 2007 I had a seizure on every single holiday and every two weeks, and several small, or partial complex seizures every day.  We decided to take drastic action and began the process to have a Vagus Nerve Stimulator or VNS implanted.
From the website:
Seizures occur when there is a sudden malfunction or “short circuit” in the nerves that carry electrical signals from the brain to the body. Depending on the location of this abnormal electrical activity within the brain, different physical symptoms can occur. (Learn more about seizure disorders.)

The VNS Therapy System works like a pacemaker to help control these electrical signals. The VNS Therapy generator is implanted just under the skin in the upper chest. Two thin, flexible wires are attached to the left vagus nerve in the neck.

The generator sends small electrical pulses to the vagus nerve, which then delivers the pulses to the brain. This gentle stimulation helps to prevent the electrical irregularities within the brain that cause seizures. Click here to learn more about the VNS Therapy System implant procedure.

Two years ago, I wrote this:
The procedure is a simple outpatient procedure and it will happen April 10th at 9 am.  After that, my life will change.  It has to.  All of my eggs are in this basket and it has to work.  I'm out of options, out of patience, and out of fight.  This HAS to work.
Well guess what?  It did.  My surgery went very well, and I had the support of many wonderful friends and family.  Since my surgery, my seizures have decreased by 79.4% monthly!!  When I have a partial complex or small seizure, it's considered a bad day, not a several-times-a-day occurrence.  I went a whole year being seizure-free, an amazing accomplishment.  I had a breakthrough seizure in September, which led to others in November and January.  (Your brain actually gets used to seizing or not seizing.)  But we made it through March!  And we're going to make it through April, clear until January 2013!  That's my goal, TWO years seizure free! 
This chart shows the correlation between the frequency of my VNS, which is slowly turned up after surgery, and the decrease of my seizures.  As you can see, once I hit a frequency of two jigawatts, my seizures decreased substantially.  Most patients see the most benefits at a frequency of two, but after my breakthrough seizures, we turned it up to 2.5.  The side effects compared to my drugs, (which I still take) are so mild they can't even be considered side effects.  Every four-and-a-half minutes my VNS delivers a charge to my vagus nerve and my voice goes hoarse for 30 seconds.  Talk about bearable.  And as my brain continues to get used to NOT having's only going to get better.

In the past few months, my energy has increased, I have been able to work more, I have been able to exercise again, and I feel like I have control again.  Epilepsy once stole my life, but thanks to the VNS, I'm slowly taking it back.

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