Monday, April 24, 2006

So, does your VNS work?

I have gotten a few questions recently asking about my VNS: Does it work?

I think that most people simply want a Yes or No answer as to whether it completely stopped you from having seizures. Unfortunately it is not that simple. The VNS will not cure you of epilepsy, but it can help control seizures or reduce the intensity and after-effects. The level of effectiveness varies between persons.

The studies by Cyberoics indicate that most people take anywhere from 3 months to a year before they get meaningful results from the device. In addition, many people report increasing effectiveness the longer they have the VNS.

Given all that, reprhasing the question would be the best way to get a meaningful answer. Instead of "Does it work?" ask, "What type of results are you getting from your VNS so far?"

So far, the VNS seems to be reducing the intensity and severity of my seizures. I have had mine a little over three months now and am already seeing some impact on my seizures. I have high hopes that the device will bring additional improvement.


m said...

So, does 'her' VNS work? DD's seizures come in the dead of night. The one that sent us to the ER was devastating. Her father found her on the floor in the hall at 2 in the morning. She was completely incoherent. We've lived with epilepsy 17 years and this is the first time we ever called EMS. 90 minutes after she was found in the hall she came around in the ER. We saw Dr. Dean for the first time a week later. 8 years ago, we considered VNS, but found a medication that kept the seizures in control for almost 3 years. I'm astounded I can't bring the medication name to mind....This epilepsy has effected my daughter's life in many ways - namely severe anxiety, low self esteem, and depression. For the first time I 'got' that these could be symptoms of epilepsy and the VNS could certainly address these concerns as well as the epilepsy itself. The first month post surgery was not bad. After initial turn on of VNS, dd's voice changed dramatically. That cycle was reported to Cindy, who made adjustments at our next appointment. Here's the long awaited answer to the question, "Does your VNS work?" Two weeks ago dd participated in a talent show singing a song she had long practiced...God Help the Outcast. We figured how to tape her magnet (God bless the inventor of duck tape!) over the VNS. I was almost blown away by the confident and calm manner my dd displayed as she sang in public for the first time. Not everyone in attendance knew of her personal struggles. None- the-less, there weren't many dry eyes in the house. Even the other teenagers were riveted by her performance. She was flawless -- scars and all. Is this all thanks to VNS? I'll never know. I suspect there were many factors in play that night. A major one being that DD feels empowered with her magnet.

The other morning dd said she thought she might have bit her tongue the previous night. This would be the first reported questionable seizure. I said something I never thought I would hear myself say. "Okay." I didn't feel the familiar dread. She kinda looked at me and said, "Yea -- okay!" Then it was business as usual.

Emeriol said...

WOW! That is absolutely fantastic that the VNS seems to be helping and that it may reduce the impact that seizures have on her life. I wish DD the best with her singing!
Thanks so much for posting. It is important for people to hear about postive experinces from the VNS.