Please pray for judy

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I was diagnosed as bi-polar years after my unsuccessful lobectomy and trying numerous AEDs and anti-depressants. Finally, the shrink put me on Risperdal, which is an anti-psychotic, but I had a reaction, and then tried Zyprexa and that is how I ended up with Type 1 DIABETES as an adult. :cry: (It was taken off the market in Japan because of the deaths it was causing in that country.) I am currently taking Keppra and Topomax for seizures and have the VNS. But I also have to give myself insulin shots now 5 times a day and really watch my diet, exercise, (which I'm not complaining about) and see another doctor on top of all the other doctors. And insulin isn't cheap, either. I don't take an anti-psychotics any more, just an anti-depressant.

Sorry your sis is having a difficult time with the VNS. I had just as difficult time with the brain surgery. It caused me more problems and I wish to this day I'd never had it done. It made my seizures worse, the depression worse......... life was a b***h for a long time.

Anyway, beware of any drugs for Bi-Polar. Another one that is advertised on TV, Seroquel, can also cause diabetes. Check them out before taking them. They may cause more harm.
 
Hi Nancy

I am so sorry for what your family is going through now.Have faith in God,i am sure your sister will be fine.

I cannot comment about the pills,wait for the other members reply.

Did you talk to your sister recently?How is she now?
 
Thankyou, everyone. I spoke to my sister for a little bit today, but she sounded very 'hurried' if you can understand what I mean, and that is so totally out of character for her. She used to be so cool, calm and collected, and now she just sounds like a completely different person. She has never in her entire life ever been diagnosed with depression untill AFTER she got that vns device, and now, even though they took the device out, she is still getting depressed and her seizures are worse then they were before the surgery. I cannot believe the fda had the brass-bal-s to put an approved sticker on that piece of crap. That device has done nothing but destroy her life and even though they took it out it continues to haunt her. I was flipping through the Maude Data Base, which, by the way, if anyone from the fda is reading this right now; then I suggest you try doing that once in a while, it might spare alot of us alot of grief, but there is report after report of people dying from that thing, people getting 'worsenning depression' worsenning seizures, you name it. From now on, if any doctor perscribes me anything at all, I'm not even going to get the perscription filled untill I look it up on the MDB and see how many people it has killed first. Beccol, I know I probably sound like a heathen right now, but I DO believe in God, also, and I think he's the only thing that is holding whats' left of my family together. It's the fda that I have totally lost faith in.
 
Nancy,don't worry everyone's praying for your sister,i hope she gets well really soon.
 
Prayers

Prayers and a Big Hug!
What specifically are the Doctors saying caused it Was the device
Defective? Did they er in where they placed the electrode? Or are they saying your sister had this problem to begin with?
None of my business but can you get a lawyer?
I strongly suspect (although have no proof or ability to get it ) that my father-in law died from a bad medtronic arrythmia device. He died in his sleep peacefully looking with a smile and his hands flat. Not a normal indication that
the device went off! Mom in Law wouldn't ask any questions.
 
Sandi, actually, the really sad part is that the device was NOT defective. What happened to my sister can happen to anyone who has this device at anytime, and that is why I really think it is very important for anyone who has this device to make sure they let all the people close to them who will be handling their affairs SHOULD the same thing happen to them, about this possible side effect. Judys' doctors kept insisting the device was not the problem and it took me to dig up all this information on it to see it DID. As far as suing goes, untill someone in the legislation department of our government reverses Regal vs. Medtronics NOONE can sue. Any device that has recieved FDA approval is protected. You can't sue the government, so forget about suing the FDA either. If that isn't the most insane thing I have ever heard I don't know what is. That's just like saying that you can't sue someone if you get into a car accident with them because the DMV gave them a liscense. Do you see how ridiculous that sounds? I was just reading about Cyberonics' approval for seizures, and that was handled so unprofessionally that it makes me really wonder what our government is thinking half the time. I was just reading on ClinicalTrials,gov trying to see the actual clinical data from their clinical trials for epilepsy and there isn't a single clinical trial that has been completed to this day. Quite a few have been terminated and then there are two that I saw that wern't even started untill 2008 and 2010. Shouldn't they have been required to prove it works for epilepsy and was safe before they even thought about getting it approved to treat something else? What was the FDA thinking allowing that? When Cyberonics first applied it was 1988, but since most of their data was only for 3-month periods of implantation the FDA told them they needed more proof, so they applied again in 1994, but was told the clinical study needed to include more patients. They only had 100 and the FDA said they needed 200 in a year long dosing study. They started seeing 'good', not 'great' results from a perliminary study in August 1996 and then in June of 1997 the companys' executives and 6 doctors went to Washington, DC to meet with the FDA advisory panel and they unamiously recommended approval. That right there just makes my blood boil. When I think about all the injuries and deaths that device has caused and the absolutely careless and completely thoughtless way the FDA handled the whole thing it makes me want to scream. When I read about the depression approval meeting and the way it was described by by the committees' secretary as being 'very unusual', emotional, and 'NOT DATA DRIVEN' it REALLY makes me wonder exactly why this approval was given. Was the FDA afraid of these people? I cannot believe that a CLASS III medical device, the class that holds the HIGHEST POTENTIAL of causing injury and/or death, was approved on the data of just a handfull of people, and data that wasn't even that good? I do not believe all that crap about it being such a difficult group of people to treat and they need this or something so bad and anything at all is better than nothing...Come on. What we really need is someone with a little more intelligence and someone who can tell the difference between chance and definete proof. We're not talking about a bandaid you can just take off if it bothers you, we are talking about an implant that can kill you if it doesn't work...or make you wish that it had.
 
You have my prayers , I had no idea there was a statue that prevented you from lawsuit of devices!
There are some people they have worked for, So it does make me wonder.
Why did they wait soo long to remove it . Yes all the conflicting meds could have also cause the other problems as well.They all have warnings on them!
I still think I'd have an attorney look over everything and see if theree any neglience here.
 
Sandi, thankyou, you are very kind. Yes, there is a statue that says you cannot sue the manufacturer of any device that has been given FDA approval. Since you cannot sue the government, and the FDA is part of the government, then if you are injured in any way, or God forbid you die, your family will have no means of recourse. Just before I checked my emails and saw yours, I was at a site that ALL of you might find very interesting. It is at http://www.ima.org.il/imaj/ar08july-18.pdf and it is an article written by Shikma Keller, MD and Pesach Lichtenberg MD, Department of Psychiatry, Herzog Memorial Hospital, and Hadassah-Hebrew University Medical School, Jerusalem, Israel. This article discusses a patient with a seizure disorder who developed a psychosis after the vns implant. He was 35 years old, and although he did have psychotic episodes before the implantthey were being treated and I guess the treatment caused him to begin seizuring everyday. He had a vns device put in. About 3 months after the vns was put in the seizures had noticeably decreased, but his mental state began to deteriorate. He became agitated and acted very strangely. He tried to take his own life by cutting his throat. His state became worse and he began acting violently and impulsively, broke the T.V. screen and became physically aggressive to other patients. Realizing there might be some link between the VNS and the psychosis, they asked the patients' neurologist to turn down the stimulation. After only a few days his violence stopped completely. These doctors wrote this article to discribe a patient who DEVELOPED INTRACTABLE PSYCHOSIS AFTER THE USE OF A VNS DEVICE FOR EPILEPSY. Please, everyone who is reading this and has a vns or is thinking about getting one, be careful. Be very, very careful. That is exactly what happened to my sister, only she was never diagnosed with a psychosis of any kind before the implant. She developed hers afterward. You all need to let at least one person you can trust to know that this could be a possibillity for you, and what you want the instructions to be should it happen. My sister sat for a year in a psychiatric hospital with a psychosis she developed AFTER the implant, and not one single doctor thought it was because of the device. Show your doctors this article, and let them know it CAN happen and also let them know what you want them to do if it does. You do not want to spend the rest of your life, or have your child spend the rest of their life in a psychiatric hospital when all they probably need to do is remove the device. That is, of course, unless the damage has already been done and they waited too long and the psychosis becomes irreversible.
 
Also, there is one more thing that everyone should be aware of. The most damaging evidence that I have been able to find that shows a definite link to my sisters' psychosis and the vns device unfortunately I only discovered recently. I had found several articles discussing the 'possibillity', but not untill recently have I been able to find so many that have been written by reputable sources which actually prove that this can and does happen. The statue of limitations is 2 and 1/2 years in my sisters' case so all this information probably won't do her any good legally, but there are those of you out there that it WILL help and that is why I am continuing to look for and post what I am finding. Everyone who is considering any type of law suit against ANY company, not just Cyberonics, should be very aware of the Statue of Limitations that your state has, which takes effect on the date of the actual implant or beginning of treatment.
 
NancyB said:
The statue of limitations is 2 and 1/2 years in my sisters' case so all this information probably won't do her any good legally, but there are those of you out there that it WILL help and that is why I am continuing to look for and post what I am finding. Everyone who is considering any type of law suit against ANY company, not just Cyberonics, should be very aware of the Statue of Limitations that your state has, which takes effect on the date of the actual implant or beginning of treatment.
Click to expand...

I won a case against Eli Lilly. The one where Zyprexa brought on Type 1 Diabetes for me as an adult. It was a Class Action lawsuit and was settled out of court. I filed within a year of being diagnosed/treated for diabetes. I had the bad vision, weight loss and it was my eye dr. who had asked if I had started any new drugs and made the diagnosis. So I put 2+2 together and got a lawyer right away.

Also, beware of all types of treatment, not just the VNS. Even the lobectomies can make some people worse. I ended up with worse seizures, depression, and psychosis at times. The doctors don't want you to know about that stuff. They only tell of the good statistics. Plus, I knew of a patient who had a stroke during surgery and ended up partially paralyzed, but he couldn't do anything against the neurosurgeon, that was part of the deal.

Several years ago at a hospital here in Denver, a man was being monitored to see where his seizures originated, possibly considering other treatments.
So he was taken off all medications, hooked up for the VEEG and waiting to have seizure(s). In the middle of the night, he did have a seizure, but the tech who was supposed to be monitoring him was nowhere to be found, and he ended up dying because of the seizure. He suffocated. If the family did sue the hospital, they could only win a limited amount because the hospital is a government facility covered by the Colorado Government Immunity Act.

One has to do their own research before undergoing any kind of treatment for any kind of condition.
 
When I saw my first Neuro after ending up 2 times in the ER for Gran Mal Seizures more than 5 minutes.He put me on Depakote initially it worked but with the weight gain and mental problems kicked in .I started fearing the Dr's were making me sicker on purpose.And my neuro kept trying to sign me in for Internal
EEG monitering I understood they were going to drill and place probes
And kept pushing the VNS- So they scared me to death of all such things, and with the meds not working as well, I so totally have PTSD over all of it!
 
My prayers,for Judy are you acting as her guardian?
I was wondering if they have checked for potential encephalopathy?
Could a virus have invaded and damaged ?
 
'One has to do some research' is an understatement. You need to research and gather information from MANY sources, not just one. If you just go to one source, and that source just happens to be gaining financially from the company you are investigating, such as recieving monies for research support, then the only thing they are going to tell you are things that will encourage you to get the treatment. You need to find sources that have NO connection to the company whatsoever. They are the only ones who will tell you the truth. You should always go to the Maude Data Base and see what injuries and deaths have been reported that have to do with what you are researching, and then, too, realize that what you are reading isn't even probably half of what is going on. Many people have not even heard of the Maude Data Base and many companies don't report what they know, even though it is the law. 'We the people, for the people' is a joke. Our country has laws protecting every institution and company in this country and the 'people' are at the very bottom of the 'justice totem-pole'.
 
Thankyou, Sandi. No, I am not her guardian. I am her older sister and I am doing what older sisters' are suppossed to do: protect our younger ones.As far as Encephalopathy' is concerned, from what I understand, that is an altered brain state and is caused by diffuse brain disease or caused by an infectious agent, metabolic or mitochondrial dysfunction, brain tumor, poor nutrition or lack of oxygen or blood flow to the brain. She was in perfect condition as far as her mental capacities before the implant. She was a very well respected Registered Nurse with alot of responsibillities and people working under her at a very busy N.Y. hospital. I don't think if she exhibited any type of altered brain state before the implant she would have been able to work in the capacity that she was. It wasn't untill AFTER the implant that all these things started to become evidible. I have, though, read several reports on the Maude Data Base where the patients oxygen flow was cut off by this device. That happenning to ANYONE would certainly cause after a while some type of brain damage.
 
Sandi, DO NOT EVER, and I do mean EVER, let any doctor push you into getting anything implanted or taken out of your body UNTILL you have thoroughly researched what they are asking you to do, and have looked to see if there are any other alternatives that don't involve such tramautic treatments. There are in most cases, many other alternative treatments then the one your doctor is offering you. Tell him or her you want to go home and think about it, then go home and get on your computer and run your doctors' name and the companys' name into the computer together and see what comes up. Make sure there isn't any kind of 'research support' between the two of them, otherwise, you may just become another statistic in some paper the two of them are writing.
 
My sister Judy

Judy had to be admitted to Intensive Care. She had formed a blood clot and they had to do emergency surgery to install a Greenfield filter, which is what I also have. I am almost at a loss as to what to do next. If you only knew my sister before all this happened, and I mean before the Vns device was implanted. It started out as something that was suppossed to help with her seizres, and instead it caused her seizures to almost kill her, disabled her for life, and has litterally put her through so much that I don't even know if I could have handled it. Judy doesn't have a mean bone in her body and it just seems so unfair that all of this has been happenning to her.She is emotionally and financially destroyed and it is all because of her decision to get this device. All she wanted was to make her daughters' life better and to be able to be the mother that she needed. What happened to her and to so many other people with not just this device but with so many others. It is HIGH TIME these companies be held responsible, and I am talking monetary compensations for all the damage they are doing to us. Yes, the FDA did approve this device, but in the same token, Cyberonics withheld alot of information from them when they sought their approval.
 
I'm sorry to hear about this latest development for your sister Nancy. I hope she can recover quickly from the surgery.
 
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