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Author Topic: Generator change  (Read 5833 times)
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« on: July 04, 2012, 05:59:01 PM »

I have posted this question before and as yet, have received no answers.
After generator change, has anyone's seizures increased?
Prior to implant my daughter was having status episodes every second month. Immediately after implant, at 0.25 mamp the status stopped. She still had seizures every day,( she has intractable epilepsy ) but I was just so grateful that there were no status episodes.
In 2010 she had the generator changed and things went downhill from there. Her seizures increased and exactly 1 year after generator change the status episodes are back. These episodes are following the same pattern as pre VNS i.e. every second month.
I have spoken to the medical company's rep and to neuro, and nobody knows why this has happened.
She's had diagnostics done and APPARENTLY all is fine.
I'm now at the point where I'm thinking of having the VNS removed, after all it's serving no freaking purpose!!!
If I am asked by anyone " Do you think we should go the VNS route?" The answere will be a resounding HELL NO!!!!
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« Reply #1 on: July 04, 2012, 08:56:05 PM »

Hi Kath, I've been tied up with the adverse events in the Legislative Activism section, sorry I missed your post. It's been real slow around here and no one is posting. I can tell you some facts. There are approx. 70,000 registered vns'.  There are 1,800 "REPORTED" deaths and 17,000 "REPORTED" adverse events, so the risk to benefit ratio is VERY high. I was nearly killed 6 years ago. My story was told in Reader's Digest and The British Medical Journal. Google Medical Devices That Can Kill for the RD version and Why the FDA can't Protect the Public for the BMJ article.

Take my advice Kath, have your daughter's device removed and don't let the doctors talk you out of it.

I'll keep you both in my thoughts and prayers.

« Last Edit: July 04, 2012, 08:58:26 PM by dennis100 » Logged
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« Reply #2 on: July 06, 2012, 11:40:43 AM »

The answer to your question is YES!

I would like to add that vns therapy has no guarantee to be effective and if it is effective, there are no guarantees as to how LONG it will work.  I have heard from some if they take a break for several months to a few years and try again it works  but I've also heard more of things going down hill and getting worse.

There are other possibilities.

Your daughter's vagus nerve could be damaged, fried from the stimulation, scar tissue build up, falling off the nerve, slipping to the wrong area of the nerve, damaged from a seizure, and even damage from self manipulation.  Most of these won't show up on an X-ray, they have to be see with the naked eye.

Asking anyone from Cyberonic$ if they ever heard of this happening will get you nothing but bullshit.  They KNOW the truth but will not tell it to you.  Even the surgeons, neuros will profess ignorance, most of them really have no idea because they don't have time to study all the info about this little money-maker medical implant.

It's all about the $$$$.  No one cares if it helps your child or not. They got your insurance to to pay for it so they made their profit.  Any problems that may develop, it's all in your head. The vns can't be the cause because it's suppose to generate more profit for X number of years.

70,000 implants and sooner or later everyone of those implanted will seek out my site. The vns has many many side effects, ranging from very mild to deadly. At some point in time, their vns will cease to be effective and will become problematic.   That is when they will find out the REAL TRUTH about vns and Cyberonic$.

I wish you luck with your daughter, I hope the removal will go smoothly.  Please stick around and get to know us.  It's been slow as Dennis said, but that will change soon.   Take care.

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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