Saturday, April 10, 2010

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.

One year 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 have not had a grand mal seizure since September, and my grand mals post-surgery have been much milder.
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, so I'll probably stay at two.  The side effects compared to my drugs, (which I still take but will eventually decrease) 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 soon, I will be able to drive for the first time in over three years.  Epilepsy once stole my life, but thanks to the VNS, I'm slowly taking it back.


Kari said...

Thanks for updating on this. I remember thinking about you so much (and praying for you during my daily prayers on my way to work) when you were about to get this done. I'm excited for you to be able to drive again (and of course I'm happy for everything that is so much better now).

I enjoyed reading "gigawatts" cause of course it made me think of Back to the Future, and I LOVE Back to the Future. :)

~*Katie*~ said...

That's sooo exciting!! I work at an AFC home and one of the residents had this same thing done not too long ago...It seems to be working!!

mommy princess said...

Things are only going to get better!! I just know it. I remember that post you wrote about having all your eggs in one basket. I remember the lump I got in my throwt when I read it. I remember praying in my head "Please Lord, this has got to work". I love you too! BFF

she's beauty and she's grace said...

Yay Chel Bell! Love you and so happy for all the progress you are making.

Lieske said...

That is so awesome! You are such a pillar of strength! I am so glad that it is working for you, you deserve it!

JeriLynn said...

I am so happy for you! I am relieved that the surgery was as successful as you hoped. :)