VNS removed or turned off

[valeriedl]

I'm wondering who's had a VNS removed or turned off and why they had it done?

I've had a VNS for 6 years now and it's helped me a ton. The battery is dead so I'm having it replaced, hopefully very soon.

My seizures have decreased and don't last as long. I'll come out of it faster if someone uses the magnet on me while I'm having the seizure. If I catch the seizure before I go into it I can usually stop it.

I'm worried that I'm going to start having a lot of seizures and they're going to be bad ones because I don't have it. I am on meds but I don't have the VNS as a back up.

 

[Belinda5000]

My VNS was turned off because is slowly started to not help me anymore like it did when I got it it 2000.I had more and more seizures that the VNS didn't catch. I had the VNS for 11 years 3 new batteries.

 

[Cint]

I'm worried that I'm going to start having a lot of seizures and they're going to be bad ones because I don't have it. I am on meds but I don't have the VNS as a back up.

I hope your neurosurgeon gets you in ASAP and gets the VNS replaced. Your seizures may return. That is what happened to me last year when I had my car accident. I had been in to my neuro just a month before and she said the battery was still in check. A month later I had a break thru CP seizure and totaled my car. When I called my neuro, she got me in the same week and finally said, "It's time for a new VNS." I had that one for 10 years and was/am on Keppra and Topomax.

Have you called Cyberonics?

 

[valeriedl]

I'm not sure if Cyberonics would be able to help because I'm waiting for the hospital to call and schedule the appointment for the surgery. If I don't hear from them by tomorrow (that will be one week from my neuro apt) I'm going to call the office and see what's going on.

Had a seizure this evening. Wasn't a bad one luckily.

 

[Bernard]

I know that Birdbomb and Dennis100 both had their VNS turned off / removed. It was making things worse for them, not better, so their situation is likely not analogous to your own.

 

[Cint]

I'm not sure if Cyberonics would be able to help because I'm waiting for the hospital to call and schedule the appointment for the surgery. If I don't hear from them by tomorrow (that will be one week from my neuro apt) I'm going to call the office and see what's going on.

Well, Cyberonics is a big help in the process of getting a new VNS because they provide the VNS and will be in contact with your surgeon. So you need to contact the surgeon ASAP to make sure he/she has contacted Cyberonics.

In my case, it took three months before I finally got my new VNS because my neurosurgeon messed up in contacting Cyberonics. So I had to do the back up work in contacting a nurse @ Cyberonics myself and get the ball rolling.

 

[valeriedl]

I called the neuro office today and they really couldn't give me any info but I got the number for the surgen to talk to them.

They were going to have me come in for a pre-op apt but when I told her that I've been having a lot of seizures lately they sculeduled the surgery for the 17th of this month. She did a sort of a pre-op over the phone with me and said that someone was going to call and let me know what I'm to do before the surgery.

I'm not sure who the surgeon is going to be. I don't know if it's the same one that my neuro said. But as long as everything goes ok with it I don't care who puts it in.

 

[arnie]

I'm glad you'll be able to get it placed so soon. Keep us posted!