Vagus Nerve Stimulator (VNS) Update

I have had my VNS for almost one month.  It was activated at the beginning of December.  I have had quite a challenge with it so far.  As I wrote in my previous post, the surgery and recovery are no piece of cake.

After a week back from the surgery, I was finally able to take off the dressings from my neck and chest.  The scars are still there, however.  I’m guessing it will take another two or three weeks until they are completely healed.  In the meantime, I have to be
extremely gentle when I wash around those areas.

One problem I have as a result of the surgery is a persistent dry cough.  It seemed as though it would never go away at first.  When I saw my neurosurgeon for a follow up appointment, he explained that it was a reaction to the tube they inserted down my throat to do the surgery.  Even though the tube isn’t there now, my system knows something was down there and still doesn’t like it.  The cough has lessened a little bit, but it will take time to fully disappear. 

Now I have a different source for coughing as well.  Since my doctor activated the VNS earlier this month, whenever the stimulation goes off, it makes me cough.  This is better than what initially happened.

The way the VNS works is that the doctor activates it and controls the settings of the stimulations by using a laptop computer and a “wand” that is held against the VNS on the patient’s chest.  The stimulation settings work like that of a refrigerator cycling on and off.  The average stimulation cycle is 30 seconds on and 5 minutes off.

When my doctor first activated my VNS, he had me hold the wand against my chest while he adjusted the settings on the computer.  He initially started at the 30 second cycle.  He told me to get ready for the stimulation, but I think no matter how “ready” you try to be, you can never imagine what it will be like when the first stimulation hits you.  I certainly wasn’t!  Those first 30 seconds under the shock of the VNS were some of the scariest I’ve felt.  When it hit me, I was gasping for breath!  Obviously, I couldn’t handle that, so my doctor lowered the stimulation level to the lowest level possible—7 seconds for every 10 minutes.  In the beginning, I still had to breathe deeply to get through each stimulation.  But after a while, I got used to it, and now I cough during that time.  Unfortunately, sometimes it happens at bad times, such as during meals, when I have food in my mouth.  It can cause a mess if the cough is particularly strong.

The VNS comes with a magnet.  You can use it to stop a seizure or to stop stimulations for a period of time.  Its primary function, to stop seizures, is useful if it works.  The setting for the magnet is higher than the regular stimulation you get from your device to get an extra boost.  I tried it once on my own and the power overwhelmed me.  It was like being stimulated for the first time—I had a hard time catching my breath.  From then on, I vowed to use it only when it was absolutely necessary.

It is still way too early to make any judgments about the effectiveness of the VNS.  In a few months, I may have a better idea of what is going on.  Stay tuned…