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Birdbomb
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« on: April 05, 2005, 04:14:39 PM »

I know this subject has been addressed before, but in light of the upcoming FDA decision on the VNS for TRD I would like to hear from my members on how the VNS was marketed to them.
  • Where did you first hear about the VNS?
  • Who first suggested it?  Neuro, neighbor etc.
  • How were you approached by Cyberonics?
  • Did Cyberonics make a personal call to you?
  • Were you taken out to lunch, dinner, drinks?
  • Were you contacted on a regular basis by Cyberonics until you had made a decision?
  • Were you invited to a seminar where several successful VNS patients told of their stories, maybe a nurse present, and a Rep from the company?
  • If so, were there any other non-VNS people present to hear this seminar?
  • Were you informed of the adverse effects that are listed in the Physicians Handbook?
  • Were you offered a Patients Handbook before or after surgery, or not aware one exsisted.
  • What kind of literature did you receive, if any?
  • Has Cyberonics kept in touch and up to date on your progress?

I do hope everyone is willing to answer these inquiries.  Marketing of a product is a science unto it's self.  Psychology plays a hugh part in designing the appeal of the product.  If you have any other input please feel free to post it.  If you have any questions, send me an email.

Thank you.

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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!
Bernard
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« Reply #1 on: April 05, 2005, 05:04:29 PM »

Where did you first hear about the VNS?

TV news segment on local ABC 5 o'clock news.

Who first suggested it? Neuro, neighbor etc.

No one suggested it.  I saw an ad for a seminar in the Houston Chronicle newspaper.

How were you approached by Cyberonics?

N/A

Did Cyberonics make a personal call to you?

They recently called my wife as a post-seminar follow up.  We told them we were not interested at this time and we would contact them if we changed our minds.

Were you taken out to lunch, dinner, drinks?

No.

Were you contacted on a regular basis by Cyberonics until you had made a decision?

Not so far.

Were you invited to a seminar where several successful VNS patients told of their stories, maybe a nurse present, and a Rep from the company?

"Invited" by a newspaper ad.

If so, were there any other non-VNS people present to hear this seminar?

At the seminar we attended, the presenters were:
  • a nurse practitioner from both Texas Children's Hospital and Baylor College of Medicine (IIRC)
  • two Cyberonics reps
  • one patient with a success story
  • one rep from the Epilepsy Foundation (which sponsored the seminar)
The audience included me, my wife and:
  • a doctor
  • an older couple looking for info on behalf of their 40ish daughter
  • another couple
Were you informed of the adverse effects that are listed in the Physicians Handbook?

I haven't read the Physician's Handbook, but based upon this thread, I'm guessing the answer is no.

Were you offered a Patients Handbook before or after surgery, or not aware one exsisted.

We have not tried VNS.  There was no mention of the handbook at the seminar.

What kind of literature did you receive, if any?

At the seminar, we received a bag with:
  • VHS video titled Power To Renew A Life.  We have not watched it yet.
  • A pocket diary titled Power To Renew My Life :: Diary.  The diary contains the VNS marketing colors and logos.  The back cover has Cyberonics contact info.
  • 1 nice VNSTherapy.com branded ball point pen.
  • A VNS Therapy for Epilepsy pamphlet from the Epilepsy Foundation
  • A VNS Therapy booklet from Cyberonics titled Bringing Life Into Focus :: for people with seizure disorders
  • A VNS Therapy cover letter and brochure from Cyberonics
Has Cyberonics kept in touch and up to date on your progress?

N/A
« Last Edit: April 05, 2005, 05:08:44 PM by Bernard » Logged

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Check out this chart of alternative epilepsy treatments.
Birdbomb
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« Reply #2 on: April 05, 2005, 05:13:29 PM »

Thank you, Bernard, very through answers. :D  
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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!
howdydave
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« Reply #3 on: April 06, 2005, 04:46:05 AM »

Howdy Donna!

I first heard about the VNS from my epileptologist when I was in the burn unit for the second time in 10 years. At that time he presented me with 2 alternatives: The VNS and surgery. At that time, the VNS was only chosen as a last resort. Since I was disqualified from the surgical alternative after about 10 months of testing, we went the VNS route.

Since I am of a scientific mindset, I guess the doc thought that I would be a good guinea pig and I was scheduled to be the first person in the Rochester area to get the implant. As things turned out, I was number 2 or 3! <_<

I was never approached by Cyberonics. It was all a medical decision and no commercial marketing was involved.

My doctor gave me a Patient's Manual (before surgery) and, since I was building a website, I contacted Cyberonics and they sent me a Physician's Manual (also before surgery) and gave me access to several pictures to use on my site.

I saw a Cyberonics rep several times at the doctors office but it soon became apparant to her that I knew more about the device than she did.

She told me some things that were blatently incorrect. When I pulled out my manual and said words to the effect: "But on page xx of the yyy Manual it says...")

I haven't seen her since.  (I haven't had any followup from Cyberonics either.)
« Last Edit: April 07, 2005, 04:24:34 AM by howdydave » Logged

Dave
Darlene
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« Reply #4 on: April 06, 2005, 05:47:31 PM »

Donna.

Hope this helps you out.

Where did you first hear about the VNS?
Who first suggested it?


The first time I saw a new neurologist, but he didn't push it on me.

How were you approached by Cyberonics?

Through my neuro.

Did Cyberonics make a personal call to you?

After my first meeting with the representative he just kept in tounch with me.

Were you taken out to lunch, dinner, drinks?

No.

Were you contacted on a regular basis by Cyberonics until you had made a decision?

The representative was calling until I told him I made my own appointment with a surgeron (who, Cyberonics didn't like)

Were you invited to a seminar where several successful VNS patients told of their stories, maybe a nurse present, and a Rep from the company?

No.

Were you informed of the adverse effects that are listed in the Physicians Handbook?

The Rep. told me of some side-effects, but not that they were listed in the Physicians Handbook.

Were you offered a Patients Handbook before or after surgery, or not aware one exsisted.

It was just left with me after the surgery.

What kind of literature did you receive, if any?

My neuro had a video about the VNS when I first started thinking about having it inserted.  He let me bring it home and study it.

After the implant the rep. that was there(who happened to be another one) left me one, VNS Therapy Patient Essentials.

Has Cyberonics kept in touch and up to date on your progress?

No.

Darlene
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« Reply #5 on: June 15, 2005, 01:31:30 AM »

Where did you first hear about the VNS? Epileptologist
Who first suggested it? Neuro, neighbor etc Epi
How were you approached by Cyberonics? Never
Did Cyberonics make a personal call to you? Have never heard from them
Were you taken out to lunch, dinner, drinks? n/a
Were you contacted on a regular basis by Cyberonics until you had made a decision? n/a
Were you invited to a seminar where several successful VNS patients told of their stories, maybe a nurse present, and a Rep from the company? NO
If so, were there any other non-VNS people present to hear this seminar?NO
Were you informed of the adverse effects that are listed in the Physicians Handbook?NO
Were you offered a Patients Handbook before or after surgery, or not aware one exsisted.  Didn't even know that one existed!
What kind of literature did you receive, if any? Just the video and booklet with testimonials.  Yeah, the information was just a commercial for the implant.
Has Cyberonics kept in touch and up to date on your progress?  Actually, they have ignored my daughter!
 :Really Mad:

Hope this helps.  Opal
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gel61820
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« Reply #6 on: July 18, 2007, 04:32:10 AM »

Where did you first hear about the VNS?  Neurologist

Who first suggested it? Neuro, neighbor etc.  Neurologist

How were you approached by Cyberonics?  Via phone after Neurologist called them that I was interested

Did Cyberonics make a personal call to you?  Yes

Were you taken out to lunch, dinner, drinks?  No

Were you contacted on a regular basis by Cyberonics until you had made a decision?  Yes, by Denise at Cyberonics

Were you invited to a seminar where several successful VNS patients told of their stories, maybe a nurse present, and a Rep from the company?  No

If so, were there any other non-VNS people present to hear this seminar?  N/A

Were you informed of the adverse effects that are listed in the Physicians Handbook?  Not by Cyberonics but I have read it here on this forum

Were you offered a Patients Handbook before or after surgery, or not aware one exsisted.  Nothing offered yet, surgery is this Friday

What kind of literature did you receive, if any? As my neurologist called it, the propogranda packet..lol.. dvd, pamphlets, etc

Has Cyberonics kept in touch and up to date on your progress?  Yes

Even though I have answered "yes" regarding Cyberonics, the local rep has yet to make any contact.  My contact has been via phone with someone at the main office.  The best information I have received thus far has been through my neurologist who set up a meeting for me with someone locally who had the VNS surgery 2 years ago and also through this forum by reading what others have had to say.

Enjoy your day!   :im_033:
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"Do not go where the path may lead, go instead where there is no path and leave a trail." Ralph Waldo Emerson

VNS implanted July 2007 for Epilepsy.  Activated August 2007.  No success, so VNS was turned off in August 2008 and COMPLETELY removed (including coils) on Nov 25, 2008.
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« Reply #7 on: May 29, 2008, 04:25:34 PM »

Where did you first hear about the VNS?  Saw Charles Donovan on the Discovery Health Channel

Who first suggested it? Neuro, neighbor etc.  I was put in the hospital after we saw Charles Donovan on TV.  We saw the Psychiatrist and brought it up to her.

How were you approached by Cyberonics?  I called them per the Psychiatrist

Did Cyberonics make a personal call to you?  Not initially

Were you taken out to lunch, dinner, drinks?  After implanted

Were you contacted on a regular basis by Cyberonics until you had made a decision?  Yes

Were you invited to a seminar where several successful VNS patients told of their stories, maybe a nurse present, and a Rep from the company?  No

If so, were there any other non-VNS people present to hear this seminar?  N/A

Were you informed of the adverse effects that are listed in the Physicians Handbook.  Very few, and I was my former Psychiatrist's 1st patient implanted, so she didn't tell me everything, and claims now she didn't know because Cyberonics didn't thuroughly train her

Were you offered a Patients Handbook before or after surgery, or not aware one exsisted.  After surgery, my husband was given one while I was in recovery, but prior, I didn't know one existed

What kind of literature did you receive, if any? Cyberonics DVD and literature about depression, how VNS worked, and some side effects

Has Cyberonics kept in touch and up to date on your progress? Absolutely not

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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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« Reply #8 on: April 14, 2015, 10:24:40 AM »

Something I'd like to revisit. Maybe we can get some of our newer members chiming in on this one.
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