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Rhae
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« on: June 22, 2011, 12:54:23 PM »

Hello I have been reading your posts for 3 days now while waiting for my registration to go through.
I have refractory epilepsy and I have exhausted meds. My neurologist told me I am a canidate for the vns. He gave me a phone# to a girl who can educate me on the vns he said.
 I spoke with a representative and an RN with cyberonics over the phone but I only met with the representative later at my neurologist office.
 I had called her up and finally we met at the neurologist office she showed me the wand and the
device the neurologist will be using to do adjustments just like in the brochure they had mailed to me.
She showed me the magnets and how they are used. I asked about any reaction she said just a sore throat.
I watched the video there then we talked and when she asked when would I be ready for surgery I said not yet as I need to talk to my family first and do some research about the vns.
After I got home I found this informative site full of differant experiences that everyone is having.
 And I have learned a lot! My excitement for the vns has change because I am better informed now.
Several meantioned a manual I thought I better find it and I did it's online and I read it and all the warnings
there is a big long list of warnings that were not meantioned when I met the representative as she said
the only side effect is a sore raspy voice and that will eventually get better.
As I read all of the warnings on the manual I have decided I need more time in making any decision about a vns. For now Im taking a low dose seizure med along with doing homepathy and relaxation techniques to
keep my seizures down as much as possible.
I want to thank all of you for your posts
God Bless
Rhae
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dennis100
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« Reply #1 on: June 22, 2011, 11:23:58 PM »

Welcome Rhae. Did the rep tell you that the FDA considers the VNS to be a permanent implant ? The electrodes are rarely removed due to the scar tissue issues. Very few surgeons will attempt the procedure due to the possible dangers involved.

Take a look at the MAUDE reports in the Legislative Activism section (if you haven't already done so) before you decide on surgery.

The device nearly killed me so I would advise against it.

Others should chime in shortly and voice their opinions of the device.

Good luck Rhae.
« Last Edit: June 22, 2011, 11:31:07 PM by dennis100 » Logged
Birdbomb
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« Reply #2 on: June 23, 2011, 06:16:10 AM »

Welcome Rhae

I see you were treated with the typical wine and dine from Cyberonic$.  Doesn't it all sound so wonderful and lovely?  Does it make you wonder if it's just that easy? Sounds just like the promises and bullshit they told me.  Next they will call you every week to see how you are doing. They will even take you and your family out to dinner. We went to Denny's, a family restaurant right across the street from the only hospital that implanted vns.  Not expensive, but very unusual.  My girlfriend's family was enticed with home visits, phone calls, promises of free medical and several more lunches and dinners because her little girl was very of interest to Cyberonics.  She was 4 and not on any medication.  Sedona was to be a test subject, only without the parents permission or knowledge. It did not end well.

You are wise to seek more information and I applaud you.  Whether or not you get the vns will be a personal matter to you.  I did just what you are doing now.  I searched out all the information I could find, but in 2002 there wasn't much on the web and and less than 10,000 implanted.  It took me 6 moths to make my decision.  Had I known then what I do now, I would not have had a vns.   I do regret my decision to implant but if I had made a different choice, this site would not be here.  
« Last Edit: June 23, 2011, 06:26:39 AM by Birdbomb » Logged

"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!
Rhae
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« Reply #3 on: June 23, 2011, 03:56:01 PM »

Thank you for sharing and sorry that you had to go through what you did.
I think you are helping many out here, and I have learned much more to help me make
my decision not to get the vns. I am not a good canidate.
I decided this through all my research and I know they will be pestering me about it. It just feels so unprofessional when that happens. Feels more like a sales pitch.
this has been the most oddest medical experience.
Am so glad I took time to think about it and very thankful for this site.
Rhae
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dennis100
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« Reply #4 on: June 24, 2011, 10:21:34 PM »

You made a wise decision Rhae.
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Birdbomb
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« Reply #5 on: June 25, 2011, 10:40:29 PM »

 Smiley
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"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!
Dispatch
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« Reply #6 on: August 25, 2011, 07:21:31 AM »

 Wink HI Rhae!

WELCOME to the Board!  So happy you found us and soooo very happy you read that manual!  KUDDOS to you for doing your research!

Hope you are doing great with your meds, homeopathy and relaxation techniques!  That's awesome!  Be well!

Cool
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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
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