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Old 10-29-2008, 08:44 AM   #1
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kelleyb37 HB User
Question Vagus Nerve Stimulator

My Dr is wanting to refer me to his partner to consider getting a VNS because I am having 10 to 20 seizures a day and they cant get them under control. I am very apprehensive about seeing this new Dr. It means I will never get to see mine again. It makes this new one my new Doc, my biggest worry is the VNS only has a 1 in 3 chance of working . If anyone has any advice for me please, I need it so bad.Thank you so very much.

 
Old 10-29-2008, 10:12 AM   #2
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Vagus Nerve Stimulator

I know one man who was one of the early patients on the VNS that likes it. It helps control his seizures. I also know a secondary person who didn't do that well on it and she had it shut off.

It's all up to you. I had a doctor try and push it on me when medications were not going well in his trying to treat me he wanted to go with the VNS. I refused. I told him I wanted to try all possible options of medication before even considering the VNS as an option. I'm glad I went that way. I may have one every 90 days or so compared to about 6-10 a month.

I would evaluate it on how many medications have you been on, how long have they tried to find a good control by adjusting the medications. Are there still options (medications) to try? and do you want to go this route or not. Don't fear saying no (or not yet). YOU are the one that makes the decisions, not the Doctor about having this implanted.

For some it has helped a lot. It is a viable option for epileptics, however remember patients still need to be on medications even with the implant.

--Travis

 
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Old 11-05-2008, 12:03 PM   #3
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nancyjohack HB User
Re: VNS & losing hope- Alternatives???

HI- I am new to this site..but a mom of a 21 yr. old, (Zach)who has had seizures since he was 9. Last year, after the use of almost every AED, and after having a reevaluation done at Mayo with few hopes of alternate treatments, Zach chose the VNS as one of his last options. We definately regret that choice for Zach. Please read the BLOGS out there in regards to the VNS! There really is a lot more info than I previously thought coming from people that have or had the VNS....most of the feedback seemed to be negative. For Zach, it has not been positive. He has not had good luck with it- it has not helped, even after multiple adjustments, it has been uncomfortable, and it appeared that he was having even more seizures. The electrodes in his neck bother him and are very apparent, and the implant site has left a huge keloid scar. (Probably more specific to how he heals.) He has remained on his AED's. The VNS has been turned off and he wants it explanted. It was a very expensive sugery. He has just been rejected as a candidate for the Modified Atkins Diet. His cholesterol is too high, as we feel that the AED's are the contributing factor. He is bright , handsome, and a fighter- he has been through almost every med for seizures....he is losing hope for his future even though he has a strong faith.Can anyone reccomend
any other treatment that has worked? Thanks! "Mom"

 
Old 11-12-2008, 03:04 PM   #4
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valeriedl HB User
Re: Vagus Nerve Stimulator

I have had a VNS implant in for about a year and a half now, I'd had eplispy about 5 years before having the operation. It has helped. My sezs aren't as bad as they were, but I'm still having them. The hope was to get me off alot of the meds that I take. I'm still taking a good bit of meds and the neuro is messing around with the dosages.

I'm still having the sez and having to take the meds, but like I said the sezs that I am having now are no where near as bad as they were before. When I used to have a sez I would have a horrible migrane headache that would last for hours after. After the sez I would have a great deal of memory loss (sometimes forgetting things that happened the whole week before). The memory loss isn't there (however I do have memory loss but I've had that since I got epilepsy). I'm having less sezs, but again still having them and still having to take meds.

As for the diet, the neuro never said anything to me about what I should or shouldn't eat. I'm a vegitarian and he knows that.

When I first had the implant put in I would feel a tingling in my throught when it would go off (every five minutes or so). I got used to it, but when I go to have it adjusted the tingling will come back for a day or so and then again I get used to it.

I also have a huge ugly scar on my chest where the implant was put in. But I've got scars all over my body from the time that I spent in the hospital, so to me it is just one more.

I can't say that the VNS has stopped the sezs but it has make them shorter and less painful. When I know I'm having the sez I use the magnet and it will stop in a minute or two. The only other thing about the magnet is that alot of the time I don't know when I'm having a sez. If I start to get an odd feeling I'll take the magnet and rub it over me. If it goes into a full blown sez I usually don't know it's going on and have to rely on someone to use the magnet on me.

Another thing too is the battery in the implant lasts 5 years (at least in mine). To have the battery replaced an entire operation has to be done again.

 
Old 11-20-2008, 12:10 PM   #5
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nikauriy HB User
Re: Vagus Nerve Stimulator

Well if i am still on time to help you let me tell you not to get any vns, get help from meds. My doctor tried all type of medications possible and none of them ***** helping and i was having seizures every single hour and it last it more than 15 minutes , my parents thought i was going to died. i felt vulnerable, horrible they had to cut my hair for and exam and the doctor said he was going to put me on last medication or else he was going to send me to a neurosurgon i said ok scared that this last medication was going to give me a horrible side affect, well let me tell you that today i am on topamax 25mg 3 time aday and i have seizures barely ones in 3 months. and i dind't need no surgery which could get you to more problems than what u already have.

 
Old 10-12-2010, 01:29 PM   #6
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Rebecca Brobst HB User
Re: Vagus Nerve Stimulator

Ive had one for about 6 years now and now its time for me to get the battery replaced. no problems with mine as far as I can tell. everything is going just fine. the only problem is that when they have to replace the battery, they have to take the whole thing out and replace it. not just the battery. I think that they are great to have, plus they dont let the seizure last as long as they would normally. It is all your choice and I got mine because the Dr wanted to do either the Vns or brain surgery, he asked me which one Id want. why would I even think about brain surgery?

Last edited by Rebecca Brobst; 10-12-2010 at 01:38 PM.

 
Old 11-15-2010, 09:55 AM   #7
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Rebecca Brobst HB User
Re: Vagus Nerve Stimulator

I just had my battery changed for the VNS and am doing just great on it. I think that getting this put in is 10 times better that having any type of brain surgery

 
Old 11-15-2010, 04:21 PM   #8
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Vagus Nerve Stimulator

Rebecca, do you know if they used the new 4th generation VNS, or did they stay with one of the older models in your case?

I was shocked at how small the 4th gen VNS is when I saw it at the conference. It is MUCH MUCH smaller than the first version of it.

--Travis

 
Old 11-16-2010, 08:28 AM   #9
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Rebecca Brobst HB User
Re: Vagus Nerve Stimulator

dont know about the gens in theVNS but all I know is that when they put a new one in it was much smaller than the first. I need to see my dr now and have him turn it up so I can feel it now.

 
Old 11-18-2010, 12:23 PM   #10
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cardshark HB Usercardshark HB User
Re: VNS & losing hope- Alternatives???

Quote:
Originally Posted by nancyjohack View Post
HI- I am new to this site..but a mom of a 21 yr. old, (Zach)who has had seizures since he was 9. Last year, after the use of almost every AED, and after having a reevaluation done at Mayo with few hopes of alternate treatments, Zach chose the VNS as one of his last options. We definately regret that choice for Zach. Please read the BLOGS out there in regards to the VNS! There really is a lot more info than I previously thought coming from people that have or had the VNS....most of the feedback seemed to be negative. For Zach, it has not been positive. He has not had good luck with it- it has not helped, even after multiple adjustments, it has been uncomfortable, and it appeared that he was having even more seizures. The electrodes in his neck bother him and are very apparent, and the implant site has left a huge keloid scar. (Probably more specific to how he heals.) He has remained on his AED's. The VNS has been turned off and he wants it explanted. It was a very expensive sugery. He has just been rejected as a candidate for the Modified Atkins Diet. His cholesterol is too high, as we feel that the AED's are the contributing factor. He is bright , handsome, and a fighter- he has been through almost every med for seizures....he is losing hope for his future even though he has a strong faith.Can anyone reccomend
any other treatment that has worked? Thanks! "Mom"
What kind of seizures does your son have? That makes a difference in possible treatment recomendations. You have to remember that what works for one person won't work for another and what didn't work for the first person might work on another. Everyone responds differently to treatments and there is no way of knowing for sure it a treatment will work or not except for trial and error. I currently battle mostly Complex Partial Seizures. I have tried most meds and ones I haven't tried I can't due to other medical issues and have had no success. My seizures are completely out of control and starting to progress. I have been battling them for about 13 years and am not a surgical canidate nor can I do the ketogenic diet. My doctors feels my best chance at this point is getting a seizure response dog and waiting for the FDA to approve Neuropace RNS. It is kind of like a pacemaker for the brain but it only goes off right before a seizure trying to interrupt the seizure and stop it before any symptoms are exhibited. Research I have found on it makes it sound like a definate possibility but it is only used for partial seizures. I don't like the idea of brain surgery either but if there is any chance of it helping the seizures and improving my quality of life I'll give it a try. Just like the quote "don't let fear keep you from playing the game"; Don't let fear keep you from trying to get better!
Good luck with helping your son and welcome to the boards!

 
Old 11-25-2010, 06:07 PM   #11
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captain kitty HB User
Re: Vagus Nerve Stimulator

The VNS is a godsend get it!

 
Old 11-28-2010, 12:50 PM   #12
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nancyjohack HB User
Re: Vagus Nerve Stimulator

The Vagus Nerve Stimulator was NOT a Godsend for my son...as a matter of fact we believe it even stimulated more seizures...please do all your research before you decide to use this. Look at the FDA Maude Reports on VNS...it may give you a different picture...
My son was also having multiple seizutures, and after using almost every drug available, he found VIMPAT reduced his seizures immensely! We are so thankful! He is currently enrolled in Community College....last year he could not function at all..there is hope.

 
Old 11-28-2010, 12:56 PM   #13
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nancyjohack HB User
Re: VNS & losing hope- Alternatives???

Thanks for your thoughts- Zach was having tonic clonic grand mal seizures...after trying just about everthing, and being disqualified for the RNS, he had the VNS removed and is now doing GREAT on Vimpat and depakote combined. Vimpat has made a huge difference for him- Good Luck!

 
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