My sister has become very ill. All the symptoms she developed AFTER the implant have returned, even though they took the device out. I just recieved this information. We are in fear for her life. PLEASE PRAY FOR JUDY I don't want to lose my sister, but things are looking very, very, very bad.
Please pray for judy
- Thread starter NancyB
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
epileric
Veteran
- Messages
- 4,499
- Reaction score
- 1
- Points
- 163
I'll be thinking of you & her.
I can see how stressful this is for you & we all know how stress is a trigger for us here so please watch that you're breathing deeply & not shallowly. Doing that always helps my stress levels, I hope it helps yours too.
Best wishes to you & Judy.
I can see how stressful this is for you & we all know how stress is a trigger for us here so please watch that you're breathing deeply & not shallowly. Doing that always helps my stress levels, I hope it helps yours too.
Best wishes to you & Judy.
Thankyou so much
Thankyou so much for your kind words and the tip about the breathing. I didn't know that and as I was reading it I caught myself doing exactly what you said NOT to do, so I corrected myself. Thankyou so much. I really didn't expect a reply back so quickly, and I was just staring at my computer, crying quietly and thinking about how much I love my sister and how I'm not ready to let her go, and then your very kind words came up...just at the right time. i don't think you will ever know how much those words you wrote meant to me. It shows me people really do still care about each other. We might not know each other on a personal level, but we have a common bond. It's very comforting to know that someone else who truly DOES know how you feel and understands your fears was thoughtful enough to let me know. Maybe I just might be able to get some sleep tonight after all. Thankyou, again. NancyB, JUDYS" SISTER
Thankyou so much for your kind words and the tip about the breathing. I didn't know that and as I was reading it I caught myself doing exactly what you said NOT to do, so I corrected myself. Thankyou so much. I really didn't expect a reply back so quickly, and I was just staring at my computer, crying quietly and thinking about how much I love my sister and how I'm not ready to let her go, and then your very kind words came up...just at the right time. i don't think you will ever know how much those words you wrote meant to me. It shows me people really do still care about each other. We might not know each other on a personal level, but we have a common bond. It's very comforting to know that someone else who truly DOES know how you feel and understands your fears was thoughtful enough to let me know. Maybe I just might be able to get some sleep tonight after all. Thankyou, again. NancyB, JUDYS" SISTER
Thankyou all so much for caring; I'll take those hugs
I just woke up after getting maybe 2 hours sleep. Meetz and Bernard, thankyou so much for YOUR kind words. I am so scared right now I am trembling. I am afraid the phone will ring and my parents will be on it to tell me my sister is dead. I honestly thought that when they took the device out all the side effects she was experiencing, especially the psychological ones, would simply disappear. If any of you had known my sister before she got this implant, you would understand why this is all so shocking to all of us. I never would have thought that implanting a device into someones' body could actually change that person so dramatically. Not just physically, but emotionally, like she has been brainwashed. It is as if the person she once was is gone, and I miss that person. I personally don't think the clinical trials that were conducted on this device really delved into what kind of 'metamorphasis' [I know I spelled that wrong] was actually taking place on a psychological level. Did they ever actually study what these electrical impulses being sent into someones brain was doing to that persons' thought process? It is almost as if she has forgotten what was important to her, like her body is still there, but her soul is gone. My sister adored her daughter, she was the apple of my fathers' eye, and now she seems to be like some type of machine, that breathes and talks and walks like she used to, but can't remember why she's doing any of those things. I'm getting the impression from my mom that her own daughter is almost afraid of her. Not that she would hurt her or anything like that, but that she doesn't know where the person who she knows as 'mommy' went. Do you remember that movie 'Body Snatchers'? It's like that. Her body is doing the things my sister would do, but she's not actually 'present' will she's doing them. Does anybody know if the side effect, 'psychosis', that is associated with this device is reversible? Is this something that can be fixed? I know for myself, if I didn't have all of you to talk to to try to understand what was going on and get someone elses' perspective about this situation who knows alot more about it then I ever will, I don't know what I'd do. If anyone knows of any actual clinical cases where something like this has happened before, can you let me know? Can you tell me if there was hope for that person? I thought the worse was over after getting that device out. I had no idea that it was never going to end. I'm sorry for going on and on about this, I know you all have your own lives and this isn't your problem; but I'm scared...I am very, very scared.
I just woke up after getting maybe 2 hours sleep. Meetz and Bernard, thankyou so much for YOUR kind words. I am so scared right now I am trembling. I am afraid the phone will ring and my parents will be on it to tell me my sister is dead. I honestly thought that when they took the device out all the side effects she was experiencing, especially the psychological ones, would simply disappear. If any of you had known my sister before she got this implant, you would understand why this is all so shocking to all of us. I never would have thought that implanting a device into someones' body could actually change that person so dramatically. Not just physically, but emotionally, like she has been brainwashed. It is as if the person she once was is gone, and I miss that person. I personally don't think the clinical trials that were conducted on this device really delved into what kind of 'metamorphasis' [I know I spelled that wrong] was actually taking place on a psychological level. Did they ever actually study what these electrical impulses being sent into someones brain was doing to that persons' thought process? It is almost as if she has forgotten what was important to her, like her body is still there, but her soul is gone. My sister adored her daughter, she was the apple of my fathers' eye, and now she seems to be like some type of machine, that breathes and talks and walks like she used to, but can't remember why she's doing any of those things. I'm getting the impression from my mom that her own daughter is almost afraid of her. Not that she would hurt her or anything like that, but that she doesn't know where the person who she knows as 'mommy' went. Do you remember that movie 'Body Snatchers'? It's like that. Her body is doing the things my sister would do, but she's not actually 'present' will she's doing them. Does anybody know if the side effect, 'psychosis', that is associated with this device is reversible? Is this something that can be fixed? I know for myself, if I didn't have all of you to talk to to try to understand what was going on and get someone elses' perspective about this situation who knows alot more about it then I ever will, I don't know what I'd do. If anyone knows of any actual clinical cases where something like this has happened before, can you let me know? Can you tell me if there was hope for that person? I thought the worse was over after getting that device out. I had no idea that it was never going to end. I'm sorry for going on and on about this, I know you all have your own lives and this isn't your problem; but I'm scared...I am very, very scared.
daisy.girl
New
- Messages
- 302
- Reaction score
- 0
- Points
- 0
nancy,
so sorry for all you are going through....you and your sister are in my thoughts and prayers as well.
maybe i missed it, but what kind of device did she have implanted?
so sorry for all you are going through....you and your sister are in my thoughts and prayers as well.
maybe i missed it, but what kind of device did she have implanted?
Neil, thankyou. Thankyou so much. We need all the prayers we can get right now. Please, Neil, pray for understanding. Please pray that we will be able to understand WHY this is happening and if there is any hope on fixing all this. I need to be strong for my parents; they are elderly and the stress is going to kill them, so I feel very responsible to find a way to fix all this, and I'm just not sure how.
Daisy.girl, thankyou also. The device I am talking about is the Cyberonics Vns device. My sister had it implanted on Febuary 26, 2008 to treat a seizure disorder and it almost killed her. Her seizures became so severe that they had to even put her on life support and she spent almost an entire year in the hospital, a psychiatric hospital, with what was called a 'psychosis', which is a documented possible side effect of that device. She had no previous psychiatric history, in fact, she was working full time as a registered nurse in a very busy hospital, and if she had any type of 'psychosis' before the implant, I don't think they would have hired her. We had the device removed, and the effects had left her on permanent Social Security Dissabillity, and now we are seeing that just removing the device doesn't insure the side effects are just going to go away. I guess they can be permanent damage. If anything good comes of this, like if someone else sees all this and decides against getting the implant and it saves them from going through all this, then maybe it at least wouldn't be in vein. But right now, I just want my sister back. I want my family to be whole again.
Update on JUDY
Good evening, everyone! I spoke to Judy a little while ago. That poor girl has been through so much and she just sounds so drained. She wants so badly to get her life back, at least what is salvageable, and I know in my heart she can do it, but she needs a little space, a lot of encouragement and a lot less critisizm. This isn't something that will happen over night, and I know it, but it is important for her to know that also, and not expect it to happen that quick. I am just praying that she finds that strength, and that she sees it will happen. If I could trade places with her, I would do it in a heartbeat, but since I can't, i will let her know every second of every day that I am here for her. And, thankyou all, for being here for me. NancyB, Judys' sister
Good evening, everyone! I spoke to Judy a little while ago. That poor girl has been through so much and she just sounds so drained. She wants so badly to get her life back, at least what is salvageable, and I know in my heart she can do it, but she needs a little space, a lot of encouragement and a lot less critisizm. This isn't something that will happen over night, and I know it, but it is important for her to know that also, and not expect it to happen that quick. I am just praying that she finds that strength, and that she sees it will happen. If I could trade places with her, I would do it in a heartbeat, but since I can't, i will let her know every second of every day that I am here for her. And, thankyou all, for being here for me. NancyB, Judys' sister
Thankyou, Elsie. I couldn't ask for more. You know, I was just sitting here reading some of the many notes I have taken over the last couple of years, and one just stood out, and as I read it again it just really rubbed me the wrong way. In Seeking Alpha there is a Cyberonics Earnings Call Transcript from Feb. 19, 2009. On July 15, 2005, when Cyberonics was granted their Depression Approval, it came with something referred to as 'Conditions of Approval'. What this means is that they can go ahead and market their device for the treatment of depression legally as of July 15, 2005, but the company had to be actively trying to complete these certain 'conditions' that the FDA gave them to really insure them that this device DID work and that it was safe for consumers. So, on that date they were told to do a 450-patient post-marketing dosing study and a 1,000 patient 5-year out-come registry. In this Earnings Call Transcript, which you also can pull up on your computer and read the whole thing, Daniel Moore is talking about the request that the company had submitted to the FDA to change the enrollment of the Dosing Study that they were instructed to do as part of these Conditions from 460 patients down to 330, and said that they were in discussions with the FDA right now about doing that. Then Anthony Petrone [Mason-Group] asks him what the savings to the company would be and Gregory H. Browne tells him that over a 12-month period it would save them about 3 to 3.5 million dollars in terms of implant and follow-up costs, and he felt that that would be very significent and is just waiting on what the FDA says. Okay, now, this is the problem I'm having with all this. Why are they discussing this almost 4 years AFTER these conditions were given? If this was something that this company did not feel was feesible, then that request should have been made when they were given the conditions, not almost four years later, after it's already been implanted in thousands and thousands of trusting people. Did the FDA really have a choice BUT to accept that proposal? If they had said no, would Cyberonics have turned around and just yanked all the devices out of everyone who got it for depression and said, oh well? If this was something they KNEW they had to do, why didn't they make that their first priority? It seems this company was more worried about expanding their business and seeking new applications for approval then they were to do these mandated clinical trials just to make sure the device wasn't going to kill a bunch of people or disable a bunch more...Oh, wait a minute. Isn't that exactly what this device IS doing?
Hi becool, I guess I wasn't very clear in what I was saying. It's not Judy that is afraid of her mom, it's Judys' daughter that is afraid of Judy. She's only 11 years old, and although she understands her mom has a seizure disorder and all, I don't think she really understands that when she is having one that her mind isn't all there, you know? She can talk when she's having these seizures, but she doesn't recognize who she is really speaking to, and her little girl doesn't really understand that. She can't comprehend why her mom, whom she knows loves her with all of her heart, is suddenly talking to her like she's a stranger, like she doesn't even really know who this little girl is. You and I are adults, and we know the effects a seizure can have on your thought process, but a child can't understand all that and it's very scarey for her daughter. They also put her on some medicine, which I'm wondering might now be having some kind of effect on her. Is anyone familiar with Lamictal, Keptra, Zyprexa, or Totamax? I know lamictal and keptra are for seizures, but I'm not sure why they put her on the zyprexa or tomoax, because she never was depressed before she got the implant, and I'm wondering if these medications might be having some sort of adverse reactions on her. Is anyone knowledgeable about any of those medications, or know of any severe side effects?
Topamax is
also for seizures, as well as migraines. And sometimes will cause weight loss. Zyprexa is an anti-psychotic med, typically used for schizophrenia and bi-polar.
Lamictal is for seizures but can also be used for bi-polar treatment. Keppra is for seizures. The only one that I have not used is Zyprexa. Of the 3 seizures meds, I've used them all, but do not currently use Keppra.
also for seizures, as well as migraines. And sometimes will cause weight loss. Zyprexa is an anti-psychotic med, typically used for schizophrenia and bi-polar.
Lamictal is for seizures but can also be used for bi-polar treatment. Keppra is for seizures. The only one that I have not used is Zyprexa. Of the 3 seizures meds, I've used them all, but do not currently use Keppra.
Thankyou very much for all that information. I've always only taken Dilantin for my seizures, and I've been very, very lucky, apparently, that it works so well for me, so I'm not very familiar with having to take several medications at the same time to treat one singular disorder. Is that a common thing? Are there many patients who have to take 2 or 3 seizure medications or several psychotic medications? If a person isn't actually bi-polar, but takes bi-polar medication, can that cause them further harm? I know that it wouldn't necessarily be the doctors' fault for perscribing it, because I'm assuming they can't do an actual blood test to see if the person is bipolar or not, and I know that she is surely going through quite an emotional 'shock', after getting back home and seeing just how much her life has actually changed, so naturally there would be some kind of depression that occurs when it all finally sinks in, but it just seems to be alot of pills to take and I am concerned on how safe that is.