The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

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

VNS or Life

Submitted by bleedingheart on Sat, 2008-01-12 - 20:11

Hi

    I have heard a lot of good comments about the VNS but, as with all treatments for epilepsy, there are risks. For some people the treatment is worse than the seizures. In your case there was a danger to your life and you are lucky to have survived the ordeal. It is a matter of having life or seizures. Given the latter is the option then there may be a chance that future medical advances or other options will give hope to help control your seizures.

Hi

    I have heard a lot of good comments about the VNS but, as with all treatments for epilepsy, there are risks. For some people the treatment is worse than the seizures. In your case there was a danger to your life and you are lucky to have survived the ordeal. It is a matter of having life or seizures. Given the latter is the option then there may be a chance that future medical advances or other options will give hope to help control your seizures.

Re: VNS or Life

Submitted by KIMPOSSIBLE11 on Thu, 2011-02-03 - 15:42
YES, FOR SOME PEOPLE, THE TREATMENT IS WORSE THAN THE SEIZURES. FOR MY DAUGHTER, IT RESULTED IN DEATH. JUST 8 DAYS AFTER HER NEUROLOGIST TURNED IT ON, SHE DIED. PLEASE HELP REMOVE THIS DEVICE, SO THAT NO ONE ELSE, HOPING TO END THEIR SEIZURE DISORDER, ENDS THEIR LIFE INSTEAD!!!

I owe you an apology

Submitted by epicnick1985 on Mon, 2019-12-09 - 02:44
I am so so very sorry, for my last reply I feel like the biggest jackass for not considering researching this. Now that I recently found out Cyberonics has a huge class action lawsuit since they are indeed responsible for many deaths. If you still have the box, or even the booklet your daughters vns magnet came in, or anything else with the model number on it that will help you. And again I am so very sorry for jumping the gun and defending the device instead of researching, I didn’t do that until I kept having twitching episodes...

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.