Opinions on VNS's

[Army Vet]

I know everyone is different so you never know until you try, but figured I would get your opinions about VNS's. It works for some and not for others. My neurologist suggested that I get one during my last visit. I have complex partial seizures.

Feel free to talk me into it or out of it with your stories/experiences. op:

 

[Cint]

I am one who favors the VNS, only because I had a bad experience with brain surgery. So in my opinion, it works far better than brain surgery. I know you didn't ask about the brain surgery, but just adding my :twocents: on that subject. The VNS hasn't completely stopped my seizures, but I can take my magnet that comes along with the program and it will help in eliminating the severity of a seizure. But like any method of treatment, like meds or surgery, there are some risks. It does/can cause shortness of breath, swallowing problems (I initially had that problem, but learned in time to swallow when the VNS isn't charging), breathing problems, etc. And when it is charging and if I try to speak, people aren't usually able to hear me because it does affect the voice--sometimes I can't speak at all, depending on whether I am in a crowded area. Overall, for me, I'm happy I had it put in. My first VNS surgery was done back in 1997, so I've been thru three VNS surgeries. They've improved over the last 15 years and the generator keeps getting smaller.

Check out this link:
http://us.cyberonics.com/vns-therapy/how-vns-therapy-works

 

[valeriedl]

I have a VNS and it has helped with my seizures. I am still having them, not nearly as many and not as bad as they were before I got it. But everyone is different when it comes to surgeries and medicines.

If I feel the seizure coming on, have a simple partial seizure, I can use the magnet and it will usually stop it from going into a complex partial.

If I don't have the simple partial and just go right into a complex partial someone else can use the magnet on me and it will bring me out of the seizure quicker and stop the seizure from going into a grand mal.

I may have one grand mal seizure a year but I was having them quite often before I got the VNS.

 

[arnie]

I had very high hopes for the VNS, but, alas, it was not to be. You can read my entire story here:

http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/

It's kind of long, but you will get a lot of information, the experiences of a number of people and a lot of opinions about the pros and cons of VNS.

Best of luck with your decision-making!

 

[Bernard]

There are a lot of posts here on the forum about the vns. Some positive and others not. The bottom line is that it may or may not help with your seizures. It also may or may not exacerbate or cause other problems.

Only you can evaluate whether your own circumstances warrant that risk/commitment, but I personally would suggest exploring every other (non-invasive) option first. YMMV.

 

[Cint]

I personally would suggest exploring every other (non-invasive) option first.

:agree:

 

[Topcat]

I'm on my second VNS. In my case the VNS really has helped. I used to have not be able to go a day without out several Tonic-clonic seizures. Now I still have them but not nearly as bad. My voice is now hoarse; that seems to be the only problem I have.

 

[valeriedl]

There are a lot of posts here on the forum about the vns. Some positive and others not. The bottom line is that it may or may not help with your seizures. It also may or may not exacerbate or cause other problems.

Only you can evaluate whether your own circumstances warrant that risk/commitment, but I personally would suggest exploring every other (non-invasive) option first. YMMV.

I agree with this. The only reason my neuro suggested that I get a VNS was because I am unable to have brain surgery and medicine alone wasn't helping with my seizures.

Luckily it has helped with me but I am still taking meds along with it. I'm on my second one now. Before I got it I was having some type of seizure just about once or more a day.

I am also still taking meds.

The only real problems I have are shortness of breath and I tend to cough/clear my throat a lot.