Dear Birdbomb and everyone else, I want to thank all of you for your support in this very difficult time. As you know, my sister Judy had one of these monstrosities implanted in her in Febuary of this year and has now been legally committed to an insane asylum. She was a registered nurse,single parent and in the process of buying her own first home and now everything is gone. She had to go before a judge and he has committed her to an insane asylum for who knows how long. This nightmare is never going to end. I have contacted so many senators and congressmen and even sent an e-mail to the White House but I guess noone really gives a d--m because it doesn't directly effect them. My wonderful parents world has been shattered and my brothers and I have been torn apart. I am still in a state of shock and cannot believe this is even happening. I keep hoping I'll wake up and it will just be a dream but it is not. What does someone have to do to get the government to listen to them? Why isn't Cyberonics being held accountable for this horrible device they have unleashed on the public? Something needs to be done and it needs to be done soon. Murderers have to pay for their crimes. Hasn't Cyberonics killed a part of each of us? Thankyou for listening. God Bless you all. Nancy B [Justice for Judy]

HI NancyB!

I am extremely sorry to hear about what has happened to Judy & your family. Please know we are here and will do all we can to lend an ear (eyes in this case), and give you tons of support thru this rough time.

Please go to the Legislative & Activism section of the board and read all that has been posted there. I can completely understand your frustration and the feeling that no one in our Government gives a hoot. You will need to have patience and be very persistant to have your voice heard. Also know there are several Senators & Congressman who do not like the ethics of Cyberonics. You may want to contact the Senate Finance Committee-that committee is lead by Senators Chuck Grassley & Max Bacus. Have you, Judy's doctors, or anyone else involved with Judy made a MAUDE report yet with the FDA? That can be done online by going to the FDA website. Have you contacted the US Department of Health & Human Services?

Some attorneys are not pursuing cases against Cyberonics solely because of the Reigel VS. Medtronics ruling by the Supreme Court over malfunctioning devices. What a lot of people don't understand is that ruling mainly covers malfunctioning devices-meaning if the device was improperly/negligently manufactured then a person and/or their family can sue. That ruling does not cover malpractice, breach of warranty, and some product liability.

I know what I am about type will be discouraging, please don't take it that way and please don't give up....things are harder to get accomplished with our Government when it is an election year and transition into office. Some things are just not priority with our Governement-that's where your persistence & diligence will be a key factor. You may want to contact your local Congressman & Senators office and ask for a face to face meeting. That is what they are there for. You may not get to see them, but they have Aides who are there who manage these types of meetings. If you pusue doing that, consider going in with an outline of what you want to cover. Base all you have to say on fact, and make a formal request for investigation in writing to present to them and also make a verbal request. These leaders also have Washington DC offices with Staffers who you can also contact. You can get these numbers & addresses off the internet by going to their websites. When you are all done, then do follow-ups. Make such a good impression that you will never be forgotten.

I hope in some way these suggestions help. I am thinking about & saying prayers for Judy, you, & your entire family. Although what you wrote is very sad news, thank you for the update, and please let us know how things are going. :bigarmhug:

B)

Nancy,

I too will pray for you and Judy and her family!

Dose she still have the VNS implanted?? If it is, is it on??
If it is in, it needs to be ex-planted ASAP. If it is still in, it needs to be turned OFF
ASAP!

Look at this web site: NAMI: National Alliance on Mental Illness
See if they have an Affiliate in your state. Call them, they might be able to help
your sister. I have found them very helpful.

I also agree, you should do a MAUDE report with the FDA. You can do it on line,
or call them. http://www.fda.gov/cdrh/MAUDE.html

Call your local news station, maybe they would do a news report, on your behalf.

ONE OF THESE DAYS, CYBERONICS WILL PAY FOR WHAT THEY HAVE DONE TO SO
MANY OF US!

:Censored:

You are not alone, your sister is not alone, we are all here for you both!!

Just for the record, her sister was implanted and her pschosis began after it was activated. The doctors refused to turn it off, in fact he upped the settings driving her further from reality! This is a very rare but extreme case and no one is listening. They refuse to see the elephant sitting in the middle of the room.

Dear Birdbomb, I just spoke to my mom and told her about this wonderful site and how helpfull and supportive everyone is and she would love to join. She asked me to give you her e-mail address so you can contact her and let her know how to join. She's like me. Niether one of us are very good at the computer but we are both learning. My mom just found out that Judy has a spot on her lung and she just got back an irregular pap smear which doesn't look good so now she needs all the moral support she can get. Please contact her and invite her to join your site. You have all been wonderful to me and she so desperately needs some moral support. Thankyou for everything you and your members do. You are all truly a God-send. Nancy [Justice for Judy]

**Nancy, for safety reasons we don't post email addresses on the open forum. I have forwarded your mom's email to Birdbomb...Oreo

Birdbomb, OMG, I do not understand how her doctors are still in practice!

It doesn't take a genius to turned the dam thing off, and see if they has
caused her break down.

This is truly a heart breaking story. This young lady needs all the prayers we
can give!

I wish we could get the doctors to check out this site, and learn from us the patients what is really going on!

Nancy B! :D

Wow, more added complications to your sisters health. I will keep saying prayers and sending good thoughts your way. I am looking forward to hearing from your Mom as well.

It is clearly documented that VNS can cause psychosis. Those doctors should have already had a baseline on her prior to implant and shut that device off when her pychosis 1st began not way after she had to be committed. A person with psychosis is not a candidate (that's in the manuals), so why in the heck would a doc keep the device going in someone who acquired psychosis? Sick and wrong....and very heart wrentching situation.

Good news on the news today...President Elect Obama appointed Tom Daschell to the position of head of the Department of Health & Human Services...that brings bunches of hope to me that Cyberonics may get Dept. of Justice regulation. It is going to take tons of letters, emails, phone calls, but lets bide our time, get Daschell in office, and proceed.

The news is also saying this is a "Medication Nation"...they need to reverb that because this nation is turning into a "Device Nation"...dangerous as pharma.

B)

I know Dachell will do good too! I'd hate to have his job, but he has a passion for it.

I hurt for Judy and your family. That doctor should loose his license to practice! When you are mentally ill it is exactly like not having a voice. You have one , but nobody will listen.

I have revieved an email from Nancy, her sister has been transfered to another hospital with blood clots in both her lungs and leg. (another listed side effect of the VNS) This is a most grave condition. :im_033:

This is just criminal!

That poor lady needs the device turned off and removed!!

I pray someone does something before it is to late!!!

:Tantrum:

Hello everyone, this is Nancy B. Before I even tell you what has been happening with my poor sister Judy, I want to thank you all again for your unbelievable show of kindness and support. My heart is so heavy and I am feeling weak, but your support and expressions of heartfelt sympathy have given me strength I didn't know I had. I wanted to update you on my sister Judy. I just got off the phone with my mom and that poor woman is getting physically sick over all this. They have turned the device off but they have not removed it yet. The doctor who did the actual implantation has said that he has no problem removing the device but he needs the doctor who did the actual "ordering" of the device to authorize it. Well, that idiot won't be back untill Wednesday but he has already said he does not see why that is even necessary because it is doing no harm just leaving it in. Obviosly this man has had a labotomy at some point in his life. Not doing any harm just leaving it in? Am I hearing this right? That thing has done nothing but harm since it's BEEN in. I think what he really meant to say was, "Well, since Judys' insurance has run out there is no way to pay for us to take it out, so we'll just leave it in. He must think we are idiots. If she still had that great insurance she had before all this I bet he'd be willing to take that thing out and put it back in as much as she wanted him to. I am going to take your advice and contact every news station in the New York area with this story and just keep calling and writing and e-mailing and eventually one of them will pick this story up and we'll just see how he feels about it then. You see, my sister Judy is pretty laid back and not very confrontational. Not me. No-saree-Bob. I am a b---h. And right now I am a very mad b---h and that doctor do-little is about to find out what a very dangerous combination that can be for ones' career. By the time I am through with him he won't be able to to pull a dogs' tooth much less do surgery on a human. I am going to give Dr. Devinsky, oops! Did I say his name? What I meant to say was DOCTOR DAVID DEVINSKY, a run for his money. Dr. Dedicksky is about to meet Judys' older sister. Yep, this is going to be fun! I'll keep you posted. NancyB

I'm glad Judy has a big sister to stand up for her, b----hes get somewhere!

:D HI NancyB!

My heart truly has been touched by Judy's situation. Your thanks is greatly appreciated, that's what we are here for.

I am glad the device is off. When did they finally do that? It's my opinion it needs to come out-coils too if that can be done safely-so she can have further testing with her newly diagnosed health problems. Blood clots and such need CAT scans & MRI's.

I hope you & your family can keep together and stay as strong as possible thru this very hard time. How is Judy's daughter doing? I wish I could give you all a :bigarmhug:!

Please hang in there. Try & stay focused & know we hear you, we are here for you, and care very much about you, Judy, her daughter, & all of your family. I'll continue to keep you all in my good thoughts & prayers.

B)

Hi NancyB,

I am so sorry to hear that your sister is still going through so much. However I am very thankful that they finally decided to turn off the VNS. You got it right about the insurance being the catalyst when it comes to getting things done... what a sad society we live in where insurance is more important than a person's health!

Others may see you as a b***h but let me tell you that as Labrat stated that will get you somewhere and it shows you do care for your sister, especially since you know she will not speak up for herself in this instance.

Please stay in touch and my prayers go out to you and Judy.

Hugs,
Cindy

Hi Nancy.

Please send me your phone number. It's urgent I speak you right away. I have been in contact with someone who can help. I have also been handed some very incriminating evidence! You just won't BELIEVE this!

Nancy>You go girl!!!

Judy is blessed to have you as her sister.

I am glad they turned the device off. Do you see any improvements, since it
has been turned off?

Make sure you read the post about MRI'S AND CAT SCANS, on this site.
As long as the device is in, some testing should not be done.

I hope you can find a doctor that can remove it ALL. Maybe someone on this
site is in your state and knows a doctor.

I'm in NC and I didn't find a doctor that would take out my coils.

You are all in my prayers


: xmas :

:D Hi Nancy!

Haven't heard an update in awhile...how are things going?

B)

Well, actually,not to good. Judy is still in the psychiatric hospital, but Monday they are going to move her to NYU to take it out. First they need to regulate her meds and get her off her blood thinner and then Thursday they will actually remove the entire device. We are a little worried about it though because in the back of our minds we are afraid that he might do something to her so he can later claim that the psycosis, bllod clots to her lungs, and worsening seizure activity had nothing to do with the device. And get this. When my brother took her to the idiot neurologist to make the final arrangements to have it removed he had the brass ba--s to tell him that my sisters' mental problems were not caused by the vns but were genetic. There is absolutely no history of any mental illness in my immediate family, nor my entire heritage and for him to say that is slander. I told the lawyer that we hired to sue him for slander too. And that's not even the best of it. I have been researching my head off on this computer and found out that the neurologist we have been having all these problems with knows Kevin S. Moore from Cyberonics! In fact I found out that Moore donated money to foundations this doctor started. When my brother asked him about Kevin S. Moore he said his jaw dropped and his face went totally white. As by brother was leaving the doctor who did the actual surgery admitted to him that Cyberonics offered him money but he wanted my brother to know that he did not take it. Now why he had to pull my brother aside to tell him that and not say it in front of the neurologist who ordered it is beyond me. Trust me though, I am going to find out. He has put my sister, her daughter, and my entire family through hell and now I will do whatever it takes to knock this neurologist off his pedistal. If anything happens to my sister during this surgery or after it there will be hell to pay. Anyway, enough blowing off steam. How have you been doing? NancyB

Hi, it's NancyB again. I just wanted to clear one thing up. On a previous post I said the neurologist' name was David Devinsky. On that point I was wrong. It is Dr. ORRIN DEVINSKY. There. Now I feel better.

:D HI Nancy!

Just wanted to let ya know I've read your posts but need to get off the computer and get to an appointment. I will get back with you soon. Take care!

B)

:D HI Nancy!

Wow...lots of stuff going on in your family's lives right now. I am sending good thoughts for an uneventful surgery, and hoping for a quick recovery for her.

I have never heard of Kevin Moore with Cyberonics, but I have heard of Daniel Moore who is the CEO. It floors me the doc admitted he was offered money but didn't accept it.

Good idea ya'll have an attorney to help you sort out the legalities to this mess.

Take care and please keep us updated.

B)

Dang Nancy, sounds like things are really going from bad to worse. I hope all goes well with your sister this upcoming week. I am also shocked to hear a doctor admit to receiving funds but I guess some things should not surprise us!

Let us know how the surgery goes. Best of luck.

Good morning everyone! It is 9:12 Thursday, Febuary 12 and my sister Judy is in the recovery room. They told me to call back after 9:00 a.m. and to tell you the truth I am scared. As soon as I write this to all of you I am going to muster up my courage and find out how she is. Please pray for Judy today. This is the beginning of the rest of her life and I want her to have her life back. She deserves that and so much more. I hope all of you have a wonderful day but now I am signing off and making that phone call. God bless all of you and I will keep you posted. Nancy B [Justice for Judy]

:D HI NancyB!

Great news! Glad you found out she is in the recovery room, and I am looking forward to hearing how she is doing and if the coils were removed as well! Thanks for the update. Don't be scared, the device is out, she made it thru the explant (which I know you expressed was a fear), and I am hoping & praying things will go smoother for you all.

Take care!
B)

Glad the explant is over. Let us know how it went.

:D HI NancyB!

Did you make the call & get great news?

B)

OMG! Nancy! I just retuned to these boards after a long absence and read your story. I understand what you are going through with the bureaucracy. It's a seemingly endless battle, but don't give up (I know you won't) because you just have to find the one person who will take on the fight and it will have to be someone who has a vested interest in the outcome. That person is out there somewhere and even though it maybe be like looking for a needle in a haystack, you'll find them or someone who can point you in the right direction. You know what they say about the squeaky wheel so you squeak as long and loud as you can. Have you contacted the AMA? The trouble with doctors is that it is very difficult to find one who will speak up against another, even when they know they are wrong or did wrong. Lawyers love to take on doctors but unless the case involves something that they themselves have had a bad experience with, they are all basically in it for the money unless you find one willing to take on the case pro-bono. I just wanted to tell you that you came to the right place when you came to this website, especially when it comes to getting support and good advice. I hope I'm not speaking out of turn here as I just read some of your posts and didn't read all of the replies. I do hope that things are looking up for your sister and that she is able to get back some of what was taken from her, as well as the justice you are searching for. Keep up the fight. : boxing :

Kathy

[/color][/size}
Dear Nancy,

I have been out of touch awhile now. I am so sorry to hear your story, but am glad Judy has the implant out. Please let us know how she is.
Don't give up on anything. There is NO reason that she had to suffer all that stuff with the VNS turned on.
It may take awhile and time to get justice, but it can be done. All you need to do is keep going on the litigation. These doctors are in deep poop after all the horrible treatment she got while in the aslylum.
Justice is slow, but you must not let anything stop you in this fight. It will end. You have my total support and prayers.
I fought social security 31/2 years before finally winning my disability case. And I did have a law firm helping me; they were a Godsend.

Hugs & prayers,
Bonnie
[/color][/size}

Bonnie, hi! How are you doing? Judy is still about the same but they are talking about her coming home for the weekend to see how she does without that thing in her. This will be the first time she will be spending time with her little girl, so we are praying all goes well. I have a question about something I don't quite understand. Is there a difference between the NCP[NeuroCybernetic Prosthesis System] and the VNS [Vagal Nerve Stimulator] ? In the research I am doing about how exactly it got approved in the first place several articles call it vns and others call it ncp. What, if any, is the difference? Thanks so much, and please take care of yourself! Nancy

Hi Nancy,

The NCP and the VNS are one in the same.

I hope that your sister's condition improves now that the device has been explanted.

Hi Nancy! I'm doing ok now. I don't have any answers for you on your question you asked. Hopefully someone else will respond that knows something. I had to add Geodon to my medicines as I was raising HELL about anything and everything. Driving poor hubby and son crazy. My mind feels calmer and quiet. : party1 : Yeah right. I cut the Geodon as the dose was too high, and I felt like a zombie. So I'm only taking 80mg per day, instead of 160mg. It's much better on the lower dose.

Sincerely,
Bonnie

Dennis, good morning! Thanks for the info. I don't know why they have to make things so complicated. And Bonnie, I sure hope your medicine gets straightened out. I know first hand [as I'm sure most of us do] that when your medicine is not exactly right it can really screw you up. By the way, the neurologist who placed the order for my sister to get the VNS has been claiming all along that he did not put the vns in to treat her seizures but to treat her depression, which really hit a raw nerve with my sister and the rest of the family because we all knew he was lying to save his own but. Well, the lawyer contacted me late last night. Apparently he has recieved the records from the surgeon who actually installed the device and they clearly state that the device was put in to treat seizures, nothing else. In fact, the word depression or psychosis or anything even close to that was never mentioned in his records. It will be very interesting to here what Dr. Dickheads' records say. If they state anything different then it will be obvious one of them is lying. And who do you think has more to lose? And if his records say anything different then it will be known that someone changed their records after the fact. Isn't that a felony? I'll keep you all posted. This is getting very interesting! NancyB

Dear Nancy,
Very interesting information on this stupid butt-head doctor. It is wrong to change anything written in medical records. I hope you sue him for all he's worth. He deserves it. You may want to get a copy (if your lawyer hasn't already) of her VNS implantation; you will want the entire record of that surgery. Don't forget about undo physical and emotional suffering she edured during her psychiatic hopsitalization. This will enable to bring more damages to the table. If you end up settling out of court, you won't get as much money as going to court; but you may save money if you settle out of court. Court costs etc. is what I mean. I was in a lawsuit many years ago, I had done nothing wrong, and the couple ended up settling out of court and won.

Hope this info. helps you.

Hugs,
Bonnie

Good morning everybody. I have a question that I reelly believe one of you will have the answer to. First of all, we are having a dificult time finding a lawyer who will take my sisters' case. Everyone of them we have contacted has said that because she signed that little piece of paper that releases the doctor from any and all responsibillity that we will have a hard time suing. I myself have had 5 surgeries and before every one of them you are given a "contract" to sign stating that you realize the risks and whatever, but if you do not sign it then they won't do the surgery. I have done alot of checking not only on her neurologist who recommended the surgery, but also on the surgeon who performed it. I also am finding out about a group called "The Doctors' Investment Fund, LLC" This is a way for doctors to invest in companies giving them the tax flexabillity of a partnership with the personal liability protection of a corporation. By forming a "LLC" it seperates them from their bussiness, protecting their personal assets in the event of a judgement against the company. Does this mean that doctors can invest in the companies whose device they are recommending and installing without actually being personnally connected to the companies? Does anyone know anything about law? Does anyone know of a good lawyer in the N.Y. area who is dealing specifically with the Vns? Thankyou everyone, I hope you all have a wonderful and productive day. Nancy

:) HI NancyB!

I hope Judy is adjusting great being at home with her daughter & family!

Regarding attorneys, the only thing I can recommend is calling the local attorney referral where the pending suit will be filed and ask them for a referral to an attorney who does personal injury cases.

Please also know that people who are Members here on the board who are in litigation most likely have been advised by their attorney not to discuss their case in an open forum such as this one or with anyone.

I wish you the best of luck on your quest. Please do keep us updated on how Judy is doing!

Take care!
B)