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theathorne
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« on: March 09, 2009, 05:38:34 AM »

Hi guys, I have posted on the regular board before...not the pediatric board. My son almost died from side effects from the VNS and I filled out a MAUDE report and they did contact Cyberonics who in turn contacted my son's neuro. In fact, today I spoke with the person from Cyberonics that spoke with my son's doctor and he told me that the doctor has agreed that the VNS was the cause of his troubles. This person also told me the settings were too high....it was on for 30 sec and off for .8 min....he said it should never be on for 50% of the time.....he also said they can play with the pulse width during the on time. Right now I have the magnet taped over it again to shut it off, but I am going to give them one more try to get it right.  He said the doctor can call the CTS line to get assistance with settings. It is too bad that doctors don't share this info with patients and their parents prior to implant so we can truly make an informed decision. Thanks to all for this message board. It has helped me to see that I have been right all along even when the doctors wouldn't agree with me in the beginning.....Thea-mother of Michael  
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labrat
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« Reply #1 on: March 09, 2009, 06:06:49 AM »

That's the total purpose of this board: to inform people and hopefully before surgery!
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dennis100
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« Reply #2 on: March 09, 2009, 06:47:15 AM »

Hi theathorne,

I also came very close to death thanks to the VNS. My thoughts are prayers are with you and your son.
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Dispatch
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« Reply #3 on: March 12, 2009, 03:34:27 PM »

:D HI Thea-Mother of Michael!

WOW, I am so happy the board has been a great help to you!  It sure has been awesome for me!

I hope Michael has success with his new settings.  When is he going to be adjusted?

Please keep us updated...I'm thinkin' about you guys!

Take great care!
B)
« Last Edit: March 12, 2009, 03:36:54 PM by Dispatch » Logged

VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
theathorne
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« Reply #4 on: February 17, 2012, 06:15:33 PM »

I am so sorry I never got back on and replied. The new settings for my son didn't work and I refused to let them keep treating him like a "guinea pig" at the expense of his health and maybe even life. The VNS has since been removed and yes he still has seizures that are not controlled by his medication, but at least he doesn't have that awful device in him anymore. I did a MAUDE report and contacted legislators and hopefully someone's life has been saved from our experience. Best wishes to all:)
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