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VNS Horror Story

Tue, 01/08/2008 - 16:44

I was diagnosed with epilepsy 16 years ago at the age of 34. My seizures have never been controlled with medications. Due to multiple focal points I didn't qualify for brain surgery. My neurologist suggested the VNS and I decided to give it a shot. I had the surgery on 7/21/00. The device never helped my condition but I didn't regret my decision to try it, that is until 7/02/06 when the device nearly killed me. On that date I started having what I thought were atonic seizures (I know better now). The episodes began with a sudden sharp pain to the throat followed by a split second of choking and then 30 seconds of unconsciousness. I never had atonics before and thought the throat pain/choking were just a strange kind of aura. My parents happened to stop by that sunday morning for a visit. They realized something was terribly wrong and called my neuro and EMS. My last memory of that morning was being inside of an ambulance. The next thing I remember was waking up in the ICU. What was actually happening is the device was stopping my heart (asystole) during the 30 second on cycles. Once my neuro realized that the problem was cardiac and not seizure activity he had to rush to his office to retrieve the equipment to deactivate the VNS. Once the device was turned off I regained a normal heart beat and have never had another "atonic" since. My VNS was programmed at 30 sec/3 min and I experienced approx 40 episodes of asystole. It's a miracle that I survived that ordeal.

 

Comments

Magnet turns it off

Submitted by Tincatt on Thu, 2008-01-10 - 22:13
What someone needs to do if they want to turn off the VNS  (at least temporarily) is hold the magnet  over the implant area as you normally would however if you  hold it there several minutes  the VNS  will be turned off  - look at the booklet Cyberonics  sent you with the VNS- It's on page 40 of the booklet. It says if need be tape the magnet over your chest and it will keep the VNS turned off. I have had a VNS since November of 2005 with no problems.

I know that

Submitted by dennis100 on Fri, 2008-01-11 - 08:09
What you do not seem to understand is that I thought I was having seizures. I had no idea that the VNS was malfunctioning. The paramedics thought I was having seizures and it took the ER staff approx 20 minutes to realize that my problem was with the VNS. Once they realized what the problem was they checked my pockets for the magnet. My Neurologist had to rush to his office (next building) to retrieve the equipment because I did not have my magnet with me.

Wht happened then where they

Submitted by Tincatt on Fri, 2008-01-11 - 21:46

What happened then were they able  to repair the VNS do you still have it?

 

I wish the paramedics had more training in the VNS it wwould also be a good idea if paramedics had a VNS magnet in with their equiptment.

What happened then were they able  to repair the VNS do you still have it?

 

I wish the paramedics had more training in the VNS it wwould also be a good idea if paramedics had a VNS magnet in with their equiptment.

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