Greetings all,

My name is Craig Malisow, and I'm a reporter with the Houston Press, a weekly newspaper (www.houstonpress.com). I'm researching a story on Cyberonics and am interested in speaking with anyone who cares to share their story. Ideally, I'd like to hear from people who live in the Houston area, but if the situation warrants it, I might be able to include testimonies from folks outside the area.

I realize that not everyone feels comfortable talking to reporters, and people value their privacy. There are ways to use your information without using your name, so we can always discuss that before diving into an interview.

Thanks for taking the time to read this,
Craig
(713) 280-2481
craig.malisow@houstonpress.com

I called Craig yesterday afternoon. He had asked if it were okay to post on this message board. We had a nice long chat, and as you can see, he has asked for personal stories.

He is not the first reporter interested in contacting my members. Here we have an individual who life is not touched by epilepsy who is interested in reporting about the VNS. I am sure several of our members in the good old state of Texas might be willing to help him out.

And those of you from other places, your input will be appreciated.

Should any one have a problem, please PM or e-mail me and we'll get things sorted out.

Birdbomb

Good luck Craig - I can't wait to read your story.

Getting any nibbles yet?

What angle are you striving towards? The posters on this board are usually those seeking answers they cannot get from their doctors or from Cyberonics. Many have difficult situations and problems so it make this place look like a bitch board.

For the most part, that is NOT the case. These are good folks here, just trying to make sense when no one else wants to help.

What I like about this is, you do not have any knowlege of epilepsy, VNS or Cyberonics, nor do you have any financial gain, so you come here with an open mind.

Hi Craig. Your original post is over a month old, but you just missed a seminar for VNS Therapy here in the Clear Lake area (sponsored by the Epilepsy Foundation). They are having another seminar Thursday, March 31 from 6:30 to 8pm at the Homewood Suites at Kingwood Parc, 23320 Highway 59 North.

They had an ad in the Houston Chronicle main section (page A18) on Sunday, March 20.

HTH!

Here is the link to the article by Craig Malisow at the Houston Press

:Great!:

Thought provoking!

Nice job, Craig, thanks for the interview!

Exposed Nerve

:wacko: Thank you for the article.

hi..tyvm for the article it was well written..bonny :Great!:

I’m the father of Sam and I liked the story as well. I think it put the heat right where it should be and that’s on Cyberonics. We all know there are risks associated with any kind of treatment especially new and experimental ones. But we should be able to reasonable expect the company is being honest with us. It’s hard to say if they were being flat out dishonest or just not completely forthcoming. And what good is the FDA if they rely so heavily on what a company tells them? Did they learn nothing from the tobacco industry for the last 40 years?

Anyway, since we got a new VNS installed correctly things have gradually gotten a little better for Sam. The duration of the seizures are going down and we are stopping more of them with the magnet alone. Since we got the new one we have not had to rush to the ER. We’ve had some paramedic visits but have not had to transport. We were doing that on a regular basis because of the length of his seizures. Instead of 15 to 30 minute average with occasional peaks of 1 to 4 hours we are now at about 5 to 10 minutes most of the time about 2 times a week. We still believe the VNS is Sam’s best long term hope at this point.

The article reports:

and...

and...

I don't get it. How did VNS Therapy become an approved option - promoted by non-profit epilepsy organizations, hospitals and insurance companies (well, not promoted, but covered by some anyways) without "gold standard" double blind studies published in peer reviewed medical journals?

As far as I can tell (see link), EEG neurofeedback has a greater depth of studies backing it with no known adverse side effects and it does not get the same consideration. :wacko:

Doubleshots;

As an investigative report, IMO Craig highlighted the questions that were being discussed on the old Cyberonic board before the shut down. These were the same questions patients had but the company sidestepped with a canned answer.

Now the FDA wants the answers and with good reason. Can you imagine the devistation of lives should the VNS approval turns out to be another Thalidamide. (Thalidamide was a drug used in the 50"s to combat morning sickness, worked great but the children were born with grossly disfigured limbs.)

I realize that is an extreme statement, but to some patients, it has been a nightmare.

The debate is NOT if the VNS god or bad.

Just keep in mind, for every success story with the VNS there is an opposing experiance. That is according to the numbers Cyberonics states.

Everyone's experiance with it is as individual as they are. There are also a lot of variables in play with the VNS. If you get a new prescription drug, the drug store gives you an information sheet about that drug BEFORE you even take it and they are willing to discuss any questions you may have. They are not promoting the drug, and they are not a representive from the drug company. So you can pretty much safely say your information won't be jaded, altered, or lied about.

Bernard;

Sweetie, only one word $

Sorry Ya'll, but I can't keep my fingers from typing on this one!
Cyberonics does NOT care what happens to anyone who has the VNS implanted in them. Yes, I have a son who had the VNS implanted in his chest at the age of 11 and I will forever regret trying to "get my miracle through the VNS". Cyberonics invited me and several other parents who had kids under the age of 12 to a luncheon to learn about the VNS. Not one time did they ever mention any of the really bad side effects other than a change of voice and maybe a tickling sensation in the throat when the VNS came on. They also told us about the possiblity of an infection and dying on the operating table. They were very "smart" about leaving out the great stuff we were never told about and only learned about after something horrible happened to our kids. By the time we left that day we all had a hand full of free Cyberonic stuff and we couldn't wait until our child had the VNS implanted. But when something goes wrong in a child under age 12 (and even teens) they call it "user error". That makes me sick to my stomach. I know a little girl (my own VNS son's best friend) that died about a year after getting her VNS. Jo-Jo died March 3, 2000 in the middle of the night in her sleep. We know she never had a breathing problem before the VNS was implanted. About 6 months after having it implanted her parents were telling us and her Neuro that Jo-Jo was having spells in her sleep where she'd stop breathing for a few seconds. The docs kept blowing it off as seizures and the tests that were ran all came back ok. Jo-Jo didn't do this every night but enough that it really bothered her Mom and Dad because she had never done this before the VNS was implanted. Her mother told me several times she thought it was the VNS doing it because it seemed to get worse every time the VNS was adjusted. Jo-Jo's death is considered a "user error". Jo-Jo still goes to school with Scott every day because he carries her picture in his bookbag. He puts it there every Fall when he gets his new bookbag. During the summer she sits on his nightstand. He still cries for her sometimes too.
That is exactly what they call Scott's problems the VNS caused too. The VNS caused Scott's Intracranial Hypertension and Papilledema and the reason why he required a g-tube because he no longer feels hunger and thirst even though his VNS was turned off over a year and a half ago. I can't prove it but I just want to make sure other parents know these things happened to Scott and Jo-Jo (and all the other stuff that the VNS has caused in other kids and adults too) and be aware it could happen to you too. Scott is stuck with this thing in his chest for the rest of his life and God only knows what that alone will do to him. Seems to me they (Cyberonics) would be adding up all these things and trying to find out what they can do do to help kids and people rather than live to see how rich they can get. This thing is killing people and they don't care!!! Are the people that work for Cyberonics even human? God only knows what all has been swept under the rug or not even been reported. I know that with us I've never gotten a call back from Cyberonics and all I wanted to know was if there was anyone else had developed IH and papilledema and had to have a g-tube placed after the VNS was implanted or if Scott was the only one. I also felt they needed to know what thier product had done to my son (hello! do something-check it out- fix it! :Help: ) To this day I still don't know if there is anybody else. All I know is they really don't care and aren't going to do anything about it either.
But it's a slap in the face calling these side effects "user errors". :So Sad: Jo-Jo's death wasn't a "user error" and neither is Scott's IH, Papilledema and g-tube.
The VNS did control Scott's seizures (totally stopped them and came off two meds) but look at the Hell it put us through and what it did to him in the process. The IH and Papilledema can come back without warning and will affect Scott for the rest of his life. He may require a shunt to drain excess fluid from around his brain and his optic nerves could rupture causing permanent and total blindness. He still doesn't have any hunger or thirst sensations so he is still g-tube fed. His VNS has been turned off for a little over a year now. If I had known half of the stuff that I found out about the VNS after it was implanted and after Jo-Jo's death, I would never had the VNS implanted into Scott and Jo-Jo would still be alive right now. I guess I need to thank Cyberonics that Scott is at least still alive :devil:
I just feel like Cyberonics shouldn't be inviting parents to these luncheons to learn about the VNS and then talking about how great the VNS is without mentioning the hidden horrible side effects. They pretty much talk parents into it then don't do anything when something happens except call it "user errors" and blames the parents for it.
I did research the VNS before I allowed it to be implanted in Scott. I honestly thought I knew everything I needed to know about it. How wrong I was. I may be stupid, but I ain't that stupid!
Well, I've ranted enough and I'm sorry if I offended anybody. Take care, Fay

Fay-
I'm am so sorry and I'm so glad that you talked about all of that. It makes me realize that the left sided face, ear and head pain that I live with day in and day out is Nothing!
Scott sounds like a wonderful kid. I can't even begin to imagine the pain that you are in, just from watching him suffer. I think there is nothing more painful in this world then watching our kids suffer and we can't do a dang thing about it.
Like you I got wined and dinned, and told all the things that you were. ( NO big deal a little voice change) I also thought that I had done all of my homework, and knew everything there was to know about VNS, how wrong I was!
Thanks for posting, I do think people need to understand all of this before they make a choice.
Elisa

EXPOSED NERVE article.

IMO; Nice job, Craig. Thank you for your interest in the VNS and making others more aware too.


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