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Riahs Mom
Riahs Mom

VNS Related Deaths

My Beautiful daughter Mariah received the VNS in January of 2000. I was given hopes and promises of a "better life" for my child. Over the years, the frequency of the seizures and the E.R visits decreased. The problems started when her voice began to change to wrapsy. The docs said it was a normal side effect. In late August of 2009 her seizure activity increased. We went to the doctor in September and the physician said her settings were still low and there was room to increase the settings. He did. Later that day my daughter complained of hiccups and they lasted a really long time. I was told by the docs that this was a normal side effect. My daughter's hiccups lasted until the day she died- October 25, 2009.

By Riahs Mom at Thu, 11/19/2009 - 3:11pm | 38 views | 3 comments
Topic: Parent Group
Cyberonics-VNS
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Recent Comments on this Discussion

Re: VNS Related Deaths

First let me tell you how very sorry I am for your lost.  How very tragic. 

 

Second,I have had so many problems with my VNS that I absolutely can not stand the thing.  I am now on my 4th revision and have had a total of 5 surgeries including the very first one to have the device installed.  The last one had to be my very last because of the massive amount of scar tissue that has developed in my neck.  I have been left disfigured and in a lot of pain.  I feel Cyberonics is too busy trying to make money off the device and is not at all concerned with the patients well being.  Something needs to be done and new guidelines need to be put in place soon.  No one ever mentioned that the wires could come out of their casing or that the wire could attatch to other surrounding nerves and the pain and problems that could occur if this happened. 

 

Again I am very sorry for your loss!!!  (((((HUGS))))

 

 

 

 

~~Amanda

trulyb...
By trulyb... on Sun, 11/29/2009 - 5:10pm
Re: VNS Related Deaths

Nancy B    Dear Riahs Mom,   My family has suffered great tradgedy because of this device, but nothing at all compared to yours. How are you holding up? Is there anything we can do to help you?

nancyjudy
By nancyjudy on Sun, 11/29/2009 - 3:22am
Re: VNS Related Deaths

My condolences to you.

 I have had the VNS since 2001 and I am having trouble swallowing food and medication at this time.  I never had this before.  My magnet is taped on so I can swallow better!  I had a swallowing test and the GI doctor will see me on monday.  He said it is do to a nerve.  HMMM! 

Thank you for your message!  It will make others aware.  When they replaced my battery I only could have it  at a low setting.  

I hope others will not go thru what your daughter and your family have gone thru.

Thank you again

Tonialpha

tonialpha
By tonialpha on Thu, 11/19/2009 - 7:13pm