Pushing the VNS

[seizuregirl]

I just got back from my appt. with my dr, and he spent 90% of the time talking about it.

He asked to have my Father join after the appt. began since I'm never aware of the seizures so he can learn if they have changed in any way, my Father recognizes them and can describe them, which is fine. But after that, my dr started talking to him about the VNS, explaining how it will bring my seizures down to nothing, strengthen my mood, and can bring me more, supposed, freedom.

I told both of them, No. I will only have another surgery done if absolutely needed, an Appendectomy if necessary, etc., etc., I don't want another one done for my seizures at all.

But now my Father wants me to have it done, the entire ride home all he talked about was to have the surgery done as soon as possible.

 

[Bernard]

It was wrong of the doc to tell you that the VNS would (with certainty) bring your seizures down to nothing. It's possible that one would reduce seizure activity. It's also possible that it won't. It's possible that it would improve your quality of life. It's also possible that it won't. It's also possible that it could exacerbate or introduce new problems. There is nothing guaranteed about the VNS.

 

[CQ:)]

I agree with Bernard
Your specialist shouldn't have told you the vns will bring your seizures to nothing as no one knows and we are all different with treatments.


I don't know much about vns, only what I read on here and another forum but I know like other surgeries it's been successful for some but not others.

When I was going through my pre surgery testing to have my left temporal lobe surgery my specialists told me it was in no way a cure but another treatment to help control my seizures where the medications weren't on their own. They said there was an 80% chance the surgery would be a success but also a chance I could take seizures again. I did go 2 years seizure free after surgery but started taking partials again in 2013 which was 2 years post surgery but they're just not a bad or as often as they were pre surgery.

I'm sure you're dad just wants what's best for you but in the end it is your decision. I know members on here which had the vns will have more advice

 

[Nakamova]

Perhaps your father and your doctor would be willing to undergo the surgery since they are so confident in its results...

Seriously, it's your decision, no-one else's. And neither your doctor nor your father should be pushing you into it.

 

[Topcat]

All I can say is from my experience. I am on my second one. After so many years the built in battery runs out.
Since my memory is so bad I can't say how many years but it's between 5 & 10 usually as I understand it.
In my case I was in and out the same day.
I would doubt, (in my opinion), that it would cut the seizures down to nothing, (but again in my case), it greatly helped me.
I know there are some here who it didn't help and one person, (who shall remain nameless) who hates the VNS.
I always thought that I would like to shake the hand of whoever made the device and I did shake the hand of the hand of a representative.
I like mine, it seems to be the only thing that helps.
I would make a free commercial for one.
But that's just me. I've been insulted here for feeling that way.
PM me if you want.

 

[seizuregirl]

Thank you everyone, Nakamova, I'm very tempted now to ask my father to test it out for me!

I just don't believe that I should have to do anything more for my seizures, when he put me on vimpat, they have been cut down by at least half of what they were, I can't say for sure, but it feels like it has, or they've become less strenuous on my body which is good.

 

[seizuregirl]

The more I think about the appt. yesterday, I'm still wondering how the vns could bring me "more freedom"? The only freedom I have is to be able to go on very short walks with my dog through the neighborhood by myself, otherwise, I'm stuck home for the rest of the day, week, month, unless a family member offers to bring me somewhere, or I'm able to hitch a ride if I overhear a conversation about a trip to a store.

I don't think that the VNS will work, what I'm sure my dr believes, so well that I can get my license suddenly. (This last little bit is humor, mind you) If it does, I'll be demanding him to buy me a car, actually an S.U.V., they perform better in the snow. I'd take a truck, but they cost more to fill up!

 

[resaebiunne]

Cars drive well in the snow too, that's a stereotype, buy a 4wd Subaru or something. Less seizures equals more freedom? I thought that was pretty obvious.

 

[valeriedl]

I got my first VNS in 2007 because my neuro recommended it, he never pushed it on me. He spent some time describing it, how it works, what the surgery was like and he gave me some info to read about it. He said it might stop my seizures or at least reduce the number I have. He also told me that I might not have to take meds along with it but if I do it probably wouldn't be as many at such high dosages. He let me know that if it wasn't working I could have it turned off but it can't be removed so there were tests that I couldn't have done, like an MRI, once I got it put it. I decided to give it a try. I was willing to do just about anything at that time because I couldn't have surgery and I'd tried almost every epilepsy med in the pharmacy but nothing was really doing any good.

I am still having seizures, about 7 a month now instead of over 20, and they aren't as bad. I am still taking meds along with it but as he said I'm not taking as many at such high dosages.

It took at least 6 months to figure out what settings to have it at and what meds to take along with it so it's not a 'get up and go' thing. Even now my neuro's still adjusting the settings and meds depending on how many seizures I'm having.

My only problem is that I almost never feel a seizure coming on. If I do feel the seizure coming on I can use the magnet on myself and it will usually stop the seizure. However if I don't feel the seizure coming on someone else has to use the magnet on me it will bring me out of the seizure faster but I'm not with someone 24/7 to use it on me. If I'm out in public and have a seizure people don't know how to use it. Many drs don't know about it either. I recently went in for testing for a surgery and a surgery that I was going to have, not epilepsy related, and had to explain to everyone in the office, nurses and drs, how to use it if I were to have a seizure while things were going on.

It's just like anything else - it works for some people and doesn't work for others. If you want to go through the surgery you could give it a try but if you don't then don't worry about it and tell your neuro, and dad, to stop pushing it!

 

[seizuregirl]

resabiunne, freedom for me is being able to get up and go when ever the mood hits me without having to find a driver and explain, What, When, Where, and the most irritating, Why. Especially now since I can't work, I have the time on my hands to do that! And yes, less seizures is more freedom.

I've never had my license, I've always been too scared to drive, especially in the winter here in MN. I've been in many vehicles that have started to slide down the hill forwards, backwards, sideways, I've witnessed too, it happening to other drivers because the city I live in is spread out over a hill and I've never wanted to experience that as a driver. But I would like to hope that I could become brave enough to get over that fear!

I also don't have a lot of trust in anything mechanized that could, according to what my dr has said, knock my seizures down to that level to have that kind of freedom. I know that seizures are here to stay, no matter what.

 

[Jeanbean]

I got my vns in 2006 and the second replacement newer version this last April. The latest version can sense when your heart rate increases as it does right before a seizure and goes off to try to prevent a seizure. The first one did not have that. I've had mixed feelings about the vns but with this newer one I'm glad I have it. I recently reduced one med out of 4 and so far so good. I think this is a personal decision and it can have draw backs no MRI's except of the brain with a special coil, it can cause voice issues I 've learned to talk around it. I go to a reputable clinic at Rush Epilepsy in Chicago and they say it's a good thing. Good luck. Jeanne