Vagus Nerve Stimulation

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Allie-Ann

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Hello...this is my first post on here. I was diagnosed with epilepsy before I began high school. Over the years the number of my seizures increased and eventually I had a stroke. My seizures still occur regularly and my neurologist is recommending Vagus Nerve Stimulation.
Has anyone had this procedure? Is there a dramatic help with seizure control?

I would appreciate ANY information on this.

Thanks,

Allie-Ann
 
Hi Allie-Ann, welcome to CWE.

There are quite a few members here that have the VNS - some with great results, some not. There really isn't any way to pre-determine if the VNS will help with seizure control or not (much like most anti-seizure medications). You have to try it to see how it works for you (which isn't great since the VNS requires a commitment in order to try it).

That said, my wife's doctor wanted her to get a VNS, but the VNS can exacerbate problems with sleep apnea and I told her (the doctor) that I suspected my wife had sleep apnea (she snored and at times would stop breathing during the night), so she ordered a sleep study for my wife. The sleep study confirmed that my wife had sleep apnea and the VNS idea is now off the table. It seems like the CPAP machine my wife is now using for the sleep apnea is helping with her seizure control as she's doing much better these days.
 
Hi Allie-Ann!

I have a VNS and it has helped me a good bit. I am still having seizures and talking meds but not as many of either as I was before I got it. The seizures I have aren't nearly as bad as they were before I got it and they don't last as long. It is something that you won't know if it will help until you get it. It does take a little while to figure out the settings that the VNS need to be put at and if you will need to take meds along with it.

I don't have auras before most of my seizures but when I do and use the VNS it will usually stop it. If I'm having a seizure someone else can use the magnet on me and it can bring me out of a seizure faster. There are times after a seizure my mom will find me with my magnet in my hand or beside me, not clipped to my pants where I keep it. I don't know if I didn't use the magnet in time or if it didn't stop the seizure. It isn't a 100% works every time thing.

There are many other people here who have a VNS and can answer questions.

It's nice to meet you!
 
Hello I have a VNS as well and have many thoughts about it...one I wish I knew prior to getting it that you can't have MRI's except on your brain with a special coil. There are so many health professionals who do not know the ins and outs of the VNS-having to ask prior to having any type of cauterization as any type of electric current can kill you!! The VNS is attached to the vagal nerve-the largest nerve in your body and if you are in contact with an electric current Zap and not sure what happens but I don't want to find out. It can cause heart attacks, strokes etc. I don't know the numbers on that. I recently had a sleep study and my neurologist said, "they did it with your VNS turned off right." NO!! So I have had so many problems with the CPAP and the pulmonologist can't figure out why. These have been some of my experiences and it's a very frustrating when I have to call the neurologist to find out if it's ok if I have a certain procedure. They don't always like to give permission as it then puts the liability on them. Ok this sounds dramatic but it's very real and you have to consider all things. I do know the VNS has made a significant difference in my seizures-great news right? I have complex partial seizures to tonic clonic-grand mal type with no warning and since getting the VNS the grand mal seizures stopped having them since age 12!! I periodically get a complex partial but those are far and few between. It is something to consider I just don't know if I would do it again. Getting used to the feeling of the stimulator is not the easiest but the outcomes might be worth it. As others have commented, it is different for each and you have to decide. I know others here will have more and different information for you. I don't want to scare you but just be aware do your research and ask lots of questions. If I've provided you with any incorrect information I apologize. If you don't like the VNS you cannot have it removed unless it's life threatening. Good luck and let me know if you have any questions. Thanks, Jeanne
 
A few of the neurologists I saw suggested a VNS, but after reading up on it, I decided against it. The fact that seizures DON'T necessarily end completely was one factor. The possible side effects & the fact that it is a major surgery also affected my decision. Another major influence was that our insurance company probably wouldn't cover a lot of it's cost.
 
Hi, I haven't been in here in a long long time. The 1st thing I see is someone not using the VNS.
I am on number four now (the battery only lasts so many years). It's a great device. As far as "major surgery" yes and no. It is out patient. I doubt if the actual surgery is over 90 minutes.
No it doesn't stop all seizures but I went from over five tonic-clonic seizures a DAY to less then five PARTIAL seizures a month.
The major problem is the first few months when it's being adjusted the area where it is implanted is near your throat which will probably really hurt. You most likely will have a sore throat feeling but that is only for the 1st few months. I knew mine helped so hurt or not when I went back in for my neurologist to set it up I would literally tell him to "Crank it up" because it worked so well.
As far as your insurance company not wanting to pay for it would they rather pay for some injury you might sustain while having a seizure? The price of the device has actually gone down as well.
 
Hi, I haven't been in here in a long long time. The 1st thing I see is someone not using the VNS.
I am on number four now (the battery only lasts so many years). It's a great device. As far as "major surgery" yes and no. It is out patient. I doubt if the actual surgery is over 90 minutes.
No it doesn't stop all seizures but I went from over five tonic-clonic seizures a DAY to less then five PARTIAL seizures a month.
The major problem is the first few months when it's being adjusted the area where it is implanted is near your throat which will probably really hurt. You most likely will have a sore throat feeling but that is only for the 1st few months. I knew mine helped so hurt or not when I went back in for my neurologist to set it up I would literally tell him to "Crank it up" because it worked so well.
As far as your insurance company not wanting to pay for it would they rather pay for some injury you might sustain while having a seizure? The price of the device has actually gone down as well.
Hi Topcat I haven't been able to see my neurologist/epileptologist since COVID started except through virtual visits and so they have not made any changes to my VNS and this is the second one I've had going on 5 years. Right now it goes off about every 3 minutes. Not sure what strength of the voltage is at this time. I can't get into see them until a year from now. I have sleep apnea and the pulmonologist can't figure out what to do. I gave them my neurologist's number. As the VNS can cause sleep apnea. Do you have any of these issues? Thanks, Jeanne
 
Hi, that's about how often mine goes off. 15 seconds every three minutes.
I can sympathized with you about getting in to see my neurologist. I had appointment to see him last week however that was postponed until this summer. He had a double load of patients. Because of that I can appreciate that it is difficult for him to see patients, however I don't think that it is fair to them to not be able to see him in a timely manner.
I see that I didn't write that I had that surgery again on the third of this month.
After I came home I received an automated call from my pharmacy, without my knowledge or permission a pain killer had been called in.
I was in no pain so called the pharmacy back and asked to have it put back, as I didn't need it. I was told that they would hold it (I forgot for how many days).
On Thursday the ninth I received an automated call about the same prescription.
Since I had business at the same facility as the pharmacy I went in and asked what it was and was told that it was something like oxycodone for my "pain" to this I replied "what pain." I also told them that I hadn't even taken aspirin or Tylenol for the "pain." And I asked again that they put it back. (I believe they did.)
I had a closed head injury that started the severe seizures (I believe that before that accident I had extremely rare seizures that were misdiagnosed.) The head injury has caused some memory loss but I don't believe I even need pain medication.
I write my experiences to show that you might have very little pain from that surgery.
Just from my experiences and from others in the epilepsy community I personally would say to at least consider this device (and it's surgery of course) IF it is something your neurologist recommends.
However that is just my opinion.
 
The other issue for me getting a VNS is that I'm completely unaware of when the complex partials I have occur--there's no aura. Unless I do something to myself, there is a witness, or I suddenly notice a huge gap in time, I don't even know that I had one. Once, for example, I was ready to go out with my mom & went to get something from my room. The next thing I knew, I was wearing my pajamas again!!
 
The VNS has helped me a lot. It turns on and off at a certain time and strength all set by your dr. You don't need to use your magnet for this. Just by doing this it has cut down my seizures.

I usually don't have an aura either so someone has to be there to use the magnet on me if I'm having a seizure.
 
Jeanne Lenzer explains the FDA's flawed approval of the VNS and how it nearly killed the central character of her book.

The Zero Hour:
 
i was offered, but my mom and i both turned it down for me, there were too many involved risk that i am not careful enough to maintain like metal detectors and stuff, and my auras are not strong enough for me to use it effectively,
 
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