Vagal Nerve Stimulator (VNS) - Epilepsy Message Board

valeriedl · 02-10-2007, 04:39 PM

I just spent this last week in the hospital in the Epilepsy monitering unit. They glued thirty some electrobes to my head to see where my sez were comming from. They cut me down on my meds to make sure that I would have them. I had five all together. They weren't grand mals, just focal sezs.

In the middle of the week my neuo came in and suggested that I could be a canidate for brain surgery, however I wasn't really into the idea of someone cutting out spots of my brain. However by the end of the week and after the monitering was done he told me that it wouldn't work for me. I had too many "bad" spots on both sides of the brian.

One other thing that he suggested was the Vagal Nerve Stimulator. He described it as a Pacemaker for the brain. It seems like something that I might be intrested in doing. I would still have to take my meds but as he described it, if I felt a sez comming on I would beable to stop it with this.

I wanted to know if anyone has ever heard of this, has one, or know of anyone who has one. How is it working for you. Do you like it and would you suggest it for someone else to use? I am going to do some research about it now on the computer, but I'd like to get everyone's two cents also!

Thank you!

aussie308 · 02-10-2007, 05:08 PM

Hi Valerie. I have a VNS. I got mine 2 years ago in Oct. I have both gran mal and petitmal seiz. (focal). Since getting my VNS my petitmals have decreased dramatically. It does take a while to begin to have an effect on most people but it does have a cumulative effect, meaning it helps more over time. Mine began decreasing within about 6 months and I very rarely have the PMs any more. Unfortunately they haven't had any effect on my GMs but since you don't have them it may be beneficial to you.

The surgery itself is usually done on an outpatient basis and takes about 1/2 an hour. The prep and recovery are longer than the actual surgery. The surgeon makes 2 incisions, one just under the left collar bone for the implant itself and one in the left side of the neck for the attachment of the electrodes to the vagus nerve. I have heard of the implant being placed under the left arm but am not familiar with that. After approx. a week to 10 days when your healing is doing well the stimulator will be turned on. This is done by placing a hand held device over the stimulator and turned on with a small computer. There are several different settings of strength of the shock to length of time between them. I don't remember The strength setting of mine, but it comes on approx. every 2 mins. and stays on for 30 seconds. You will also get magnets to turn it on at more frequent or longer intervals if you feel a seiz. coming on or some else sees you having one. When my magnet is used it stays on for 1 min. The first few times it comes on you feel a mild tingling but it does not hurt. Within a few days I didn't even feel that very often, and I don't feel it at all now unless I think about it. The only side-effect from it is your voice is affected when it comes on. It just gets softer and slightly hoarse sounding until it goes off again. That can be kind of a pain but it's good definately outweighs that.

Hope this answers some of your questions and if you have any others please feel free to ask. good luck, Laura

Travis from MN · 02-11-2007, 10:55 AM

You can also obtain a promo video from the makers of the device if you want to learn more about it. Suprisingly it does give both sides of the coin in it, at least in the early version I viewed.

If you tell them you are a canidate for sugery and want to know more about it most likely they will send you the info pack no questions asked. "Cyberonics" is the company name is you want to do a web search for their site. If not available by web, call their toll free and ask if they can send you an info packet and video, explain you are a canidate for surgery and want to learn more before deciding.

From one who didn't, My Dr didn't want to deal with me and pressured me to have the surgery without even testing me! Medications were failing after trial and error. He was getting upset with it. I told him I will try all available medications before we go with the implant. In one way I'm glad I said that. It took a few more meds, but the proper mix was found that controls my seizures.

Others I know have the implant and love it. One even had to have it replaced (upgraded?) due to the time it was in for the battery was starting to wear down. He started out with the 101 (very early!) and now has the 102.

There was one thing I learned when dealing with him, and due to the cost of the "official" magnets. Rare Earth magnets (science stores, surplus stores) work just as well if you happened to break or lose yours in a pinch. We kept a small one in a plastic housing at the apartment he visited to use just in case a seizure would strike him. It worked through the plastic. Just keep them away from computers (tube moniters) and data material.

--Travis

aussie308 · 02-11-2007, 11:54 AM

Good tip Travis. Also keep them away from credit cards. Found that one out the hard way keeping my magnet in my purse, completely erased the card.
We also found out the large shake-up flashlights have a powerful enough magnet to turn the stimulator on.

I dealt a lot with Cyberonics before I got my implant and they were very helpful then. A represntative is supposed to be at the hospital with you to give you your set of magnets and answer any further questions you may have. (also the model#, warranty, etc.)When I had mine the rep. came to the hospital gave one of the nurses the box and left. He never made any effort to see me or my husband. They are also supposed to follow up with you and call you within a few days of your surgery and then ever couple of months for a while to see how you're doing. Never heard another word from them. my hubby called the company and asked why the rep. hadn't met with us as he was supposed to, he was having a bad day and just wanted to go home.(that was what he told my DH) Not even an apology. I don't know if anything has changed with thier support system since then or not, but I wouldn't count too much on them.

I'm not trying to discourage you from having the implant at all. Just letting you know you will have to stand up to them from the beginning and let them know you expect them to do what they say. Hopefully things have changed a bit since then. I wouldn't let that alone discourage you from considering it and doing more research youself.
Good luck and let us know what you decide, and ask any other ? you may have. Laura

aussie308 · 03-09-2007, 05:23 PM

Valerie, have you checked into VNS therapy yet? Curious to know if you have and what you decided.