To the friends of the VNS Message Board

The folling is the response that I received from my Senator.

Thank you for contacting my office regarding your concern.

I appreciate your taking the time to bring your views on this important matter to my attention. As a United States Senator, it is essential that I be kept fully informed on the issues of concern to my constituents. Be assured that I will keep your thoughts on this issue in mind as the Senate considers future legislation. If you have any further questions on this issue or any related issue, please visit my website, http://specter.senate.gov.


Sincerely,


Arlen Specter

I don’t want him to keep my thoughts on this issue in mind as the Senate considers future legislation. I want him to tell me that he will investigate the situation and try to have something done about it, if I wanted to think about it I wouldn’t have said anything to him.

Because of this response, and I have thought about it for a few days now and I feel that we should proceed to the next level. That level would be for us to try to go Public with our stories on national TV if we can get one of the Net Works to listen to us.


I got an email from Dispatch with the following information.

I contacted ABC News 20/20 thru the internet for a possible story about VNS malfunctioning devices and patients being improperly implanted. This is the email I got back from them. When you have time, maybe you can bring this to the attention of Donna Baum (Birdbomb on the VNS Message Board) and several of us can write a letter. What do you think? I was thinking about 20/20 and Good Morning America.
Thank you for your request to ABC News.

To submit a story idea to one of the ABC News shows listed below, write a single page letter including your name, phone number, and address. Include photocopies of backup information. On the outside of the envelope, write 'Story Idea.' If a producer is interested in your story, he/she will contact you. Here are the show addresses:

20/20
147 Columbus Avenue
New York, NY 10023

Primetime
147 Columbus Avenue
New York, NY 10023

Nightline/This Week
1717 DeSales Street NW
Washington, DC 20036

World News With Charles Gibson
47 West 66th Street 2nd Floor
New York, NY 10023

Good Morning America
147 Columbus Avenue
New York, NY 10023


What I would like to do if it is ok with everyone, is to cut and paste your stories from the message board and compile them in one file and send them along with the request to have are stories told. If any one does not feel comfortable with me doing this just go back into your story and put NO at the end of your story and I will not copy your letter.

While all of this is going on I will get with a Lawyer here at home and have him give me the correct interpretation of the Supreme Court Ruling. If the ruling does say that we cannot sue a company for a bad product, them we focus on letting the public know that Cyberonics has hurt a lot of innocent people and that they have not been forth coming with all of the information that we need to know about the product.

Also Dispatch brought to my attention another message board site.
This message board, I think is employees of Cyberonics. But be forewarned there is some very strong language used in some of the messages. Here is the site if you want to check it out. http://www.cafepharma.com/boards/forumdisplay.php?f=208

I didn’t know that grown men with Collage Degrees used such language; I thought that they had a better knowage of the English language.

If any one has any Ideas or thoughts on this proposal please contact me as soon as possible.

Also I would like to thank Dispatch for your help with new Ideas.

Also Birdbaum I would like your input before I officially do anything.



Keith

Keith,

This is just GREAT! I am so glad I found this site. The people here are soooo supportive.
You can use anything I have posted. If you need more, let me know.

After I see the throat doctor on the 28th, I will know if my next step is to see an attorney. If I can not sue Cyber, than I will go after the doctor that implanted me.

This is all very frightening, not knowing what is going on in my neck, with my body!!!

Thanks for your hard work,
Jennie

Keith, I am so impressed with your efforts this thread will become the mantra!

I just want to stess on thing of importance.

THIS IS NOT A WITCH HUNT AGAINST CYBERONICS

It's about companies taking responibilitiy when they market and sell their product as deceptively as this company apparently has. Many members, myself included, have stated, had they known BEFOREHAND the side effects and other pertenant information, they would have never had it implanted. When you get a prescription filled, you get the full known medical information sheet before you even open that bottle, but not with VNS. It's not until it's implanted that you get the patient manual and even then only a handful of side effects are listed.

Since Cyberonics updated their website, it's very difficult to even FIND a factual and full disclosure of side effects unless the Physician's Manual is downloaded. And even THAT list is written in very gerneralized terms.

WE WILL DO WHAT WE HAVE TO DO

Fantastic idea !!!

Feel free to use the story of my encounter with the VNS.

:bigarmhug: You go Keith! And you are very welcome! Thanks for you and your wife becoming a very important part of my life! All of you on this site are very important to me. Keith, please feel free to use anything I have put on this site, or if you'd prefer, I can type something up, scan it, and e-mail it to you. Just let me know what you'd like and what is easiest for you. Kuddo's to you Keith!

Dispatch

I am so thankful for this website. I felt so alone for so long! I'll do whatever it takes to get some JUSTICE for us all. :bigarmhug: