Vagus nerve stim

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The vns does NOT have FDA approval for under the age of 12 for epilepsy and 18 for depression. If your child has a problem, develops any life long disorder listed in the Physician's Manual (the Patient manual only lists about 1/2 of the problems) or God forbid, dies, it will be considered user error. Cyberonic$ will not be responsible in any way and you won't be able to sue them even when they are caught lying. (read the history of HOW vns is approved by the FDA. )

Make ALL promised results be in writing. Tell the Reps to SHOW you proof of their claims. the numbers in the studies.

Remember the saying, "If it sounds too good to be true than it probably is." fits the vns.

While almost 33% have some type of improvement, that leaves over 66% who experience otherwise. Want to know the side effects? Talk to those who have been there. Google is your friend.

Dennis had his vns for several years before it damn near killed him and had his parents not been there, his death certificate would have read SUDEP.

Surgery should be the very LAST thing tried. Once you cut into the body it will be forever changed and scar tissue makes removal of the electrodes impossible.



Have you tried the ketogenic diet?
http://en.wikipedia.org/wiki/Ketogenic_diet
 
Birdbomb said:
Surgery should be the very LAST thing tried. Once you cut into the body it will be forever changed and scar tissue makes removal of the electrodes impossible.]
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Birdbomb, question, when you say this about surgery you're just referring to the VNS right? Not an actual lobectomy or other brain 'surgery' ?
 
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I have a vns and I dont recommend it at all it worked fine at first then couple yrs went by and it seemed aeizures were getting back to where they were and side efffects in my situation almost unbearable not sure if even working besides when it feels its gonna explode but I would try lamictal keppra bad memory loss again personal experience just dont konw if right for child til all other resourcesbeen used my opinion.
 
The scariest thing is I wasn't alarmed by anything. I just thought that I was having another bad day. What I thought were atonic seizures turned out to be heart stoppages.

The vns was stopping my heart during the 30 second stimulation cycles. The last thing I remember about that morning was talking to the paramedic. The next thing I knew I was in the ICU with a cardiologist by my side.

I wouldn't recommend the vns.
 
acpollard2010 said:
I have a vns and I dont recommend it at all it worked fine at first then couple yrs went by and it seemed aeizures were getting back to where they were and side efffects in my situation almost unbearable not sure if even working besides when it feels its gonna explode but I would try lamictal keppra bad memory loss again personal experience just dont konw if right for child til all other resourcesbeen used my opinion.
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One of the reasons that I was placed on the VNS was due to the medication was not working for me. Lamictal has serious side effects that I had been receiving and my neurologist was actually quite alarmed when he received a note from the FDA on it. Due to my situation, over the years I was on 15 different types of AED medications which is why we chose to try out the VNS as the next option because nothing else was working.
 
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qtowngirl said:
Birdbomb, question, when you say this about surgery you're just referring to the VNS right? Not an actual lobectomy or other brain 'surgery' ?
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It (the VNS) was the LAST resort for me! I only tried it after a failed brain surgery (that surgery made seizures much more intense for me) and trying numerous drugs, to no avail! I will never understand why others jump right in and have the VNS surgery done so soon, without trying other options, and then complain about the side effects of it. It has stopped the TC seizures and most of the CP's, at least I don't have as many.

Drugs and brain surgery are just as dangerous as Birdbomb and Dennis claim the VNS to be. What works wonders for one, may kill someone else!!! I've known of several who've suffered from strokes during brain surgery, one died on the operating table, another died during a seizure while at the hospital here in Denver because the nurses did not respond in time.
 
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I didnt jump right in went through extensixe tests and tried 10 different meds and epilepsy monitoribg unit
 
Fda has had no big issues or they would have marked it for deletion now keppra or vimpat love to tell thoae drugs to take a hike
 
We a considering this for my daughter she is four and has trouble controlling her seizures with meds. I see people saying yes and no on here but why?


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Taylor mom its your family decision but its a electronic device u r putting in a body I cant have any mri s b/c of it which in my case sucks cause need shoulder surgery but cant get good enough look without it..but the vns has its pros an cons u still have to take meds u hope not as many and that the side effects arent to bad and the feeling goin bak to school and expain a slash on your throat. Cause after surgery it hurts its still surgery so 3wks after are crap.but if u think its whats best for development.i posted earlier about how much I dont like it to one person might be a terror another prayer answered!
 
Yeah we are still researching it for now. My daughter is having a lot of very bad reactions to her medicine and we have tried so many. Our dr said she may not need any meds if she has the vns. It is a ways off just exploring options for now


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Taylor's_mom said:
Our dr said she may not need any meds if she has the vns.
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I think the operative word is "May" when s/he refers to not needing any meds.

I've checked a few studies on the VNS & so far the ones that have helped have lessened seizures (not stopped them) in conjunction with medications. Realize this study is just for refractorypartial seizures. (I bolded some words)

Summary: Vagus nerve stimulation (VNS) was shown to reduce seizure frequency in refractory epilepsy patients in two pilot studies. Based on these results, a multicenter, prospectively randomized, parallel, double-blind study of patients with refractory partial seizures was initiated. After a 12–week baseline period, identical vagus nerve stimulators were implanted and patients randomized to either a high or low 14–week VNS treatment paradigm. The primary objective was to demonstrate that high VNS (therapeutic parameters) was more effective in reducing partial seizure frequency than was low VNS (less or noneffective parameters). Patients continued receiving antiepileptic drugs with plasma concentrations held constant throughout the study. We report results of the first 67 patients to exit the 14-week acute phase. After 14 weeks of VNS, 31 patients receiving high VNS experienced a mean seizure frequency percentage reduction of 30.9%, which was statistically significant as compared with the mean seizure frequency percentage reduction of 11.3% in 36 patients receiving low VNS (p = 0.029, t test; p = 0.036, Wilcoxon rank-sum test). In addition to the significant intra group p-values, mean seizure frequency percentage change reached statistical significance for high VNS (p < 0.001) but not low VNS (p = 0.072) as compared with baseline. Twelve of 31 (38.7%) patients receiving high VNS achieved at least 50% reduction in seizure frequency whereas 7 of 36 (19.4%) patients receiving low VNS experienced at least 50% reduction after 14 weeks. The implant procedure and VNS therapy were well tolerated. Our study confirmed the effectiveness of VNS as treatment for epilepsy patients with refractorypartial seizures.
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http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1157.1994.tb02482.x/abstract

It is for that reason that it should be a very last option. Also I've never seen any reference to people as young as your daughter being given a VNS.

I would suggest you check out the studies from scientific sites to check the statistics of how they have helped people so far. Try searching with Google Scholar, . Just watch when the study was done (you don't want it too long ago), that a sufficient amount of people were studied and how they measured the success (their definition of "successful" might not be yours)
 
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Now, that I'm seeing a little bit more into it... I am going to change my answer.

Age 4 is WAY too young in my personal opinion and I'm going to tell you why. I am the farthest from being a medical professional. But I am someone who has experience with the VNS on a personal level. This is not a medical item that I would use on my daughter because of the following, these are my personal experiences:

1) I have god daughters, god sons, nieces, and nephews and I don't have the heart to put them through the constant coughing this item does, the constant dry throat that the VNS gives you.

2) When one setting does not work, your daughter needs to go in and be reset onto an higher setting. As someone who has gone through it, when the VNS does respond some say it feels like a tingle but others have stated it feels like a sting. I could not put my daughter through that sort of pain with her young body not being fully grown.

3) The VNS is not implanted deep; it is only placed near the top of the body. Secondly, with a small body such as your daughter's she does not have as thick of skin as an adult or even as a teenager. Considering that factor, this item would be very close to the surface and will most likely cause pain whenever it is touched.

I have more thoughts racing through my mind but just with the above I have listed, I would highly suggest getting a second opinion.
 
my doctor never told there was even a possibility of being off my pills he said maybe one or two pills never even said may.different situation but wow.
 
acpollard2010 said:
my doctor never told there was even a possibility of being off my pills he said maybe one or two pills never even said may.different situation but wow.
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the VNS works with your medication not by itself. I was informed of that by my neurologist and my neurosurgeon during our meetings. I was also given paperwork that states it.

It amazes me why a doctor cannot provide the correct information to his or her patient like they are supposed to. I am sorry you were treated so poorly. The best I can suggest is finding a neurologist that will take care of your situation as a patient who needs care and not a financial number. I hope you get this matter resolved.
 
Yeah she said it may get her off meds not a sure thing. I have seen a few kids that have the vns and do great though. One even is off meds completely. None of them seemed to have any pain because of it. I had never heard that. We haven't sat down and talked about it with the dr in depth yet she justify that may be an option for Taylor. I have been reading a lot about it online and have seen pretty mixed results.


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I honestly believe that you need to ask the doctor to not only tell you what might happen (good & bad) but what percentage of people given a VNS have had that happen too.

I think that will give you a better idea of your daughters chances.

Also ask how common it is for children her age to get a VNS.
 
Oh yeah of course we will have some very serious chats with her dr before we get there. I am just doing some of my own research first so i know what questions to ask


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