vns magnet info

[arnie]

I may put this in my vns thread, too, but I thought I would make a new thread with this title so people will know specifically what I'm talking about.
So, for those of us with vns, we are familiar with the magnet. For those not familiar with the magnet, it's a magnet (obviously!) that we keep with us to trigger our vns unit if we feel a seizure coming on. The magnet is pretty darn big (about 6 cm x 3.5 cm x 1 cm) and you have to wear it around your wrist or ankle or clipped to your belt. They look kind of like those electronic monitoring bracelets that they put on criminals. You also have to be careful not to get it close to your credit cards or computer stuff, and probably your ipod, I would imagine, because it might play havoc with those things. It's just huge and clunky, frankly. Anyhow, I got to thinking that there should be no reason why a smaller magnet wouldn't work just as well, so I got a little one (1 x 1 x 1/2 cm) and glued it to the back of a pendant I wear under my shirt much of the time anyway. It's completely unnoticeable, and it triggers the vns just fine. Just to make sure I wasn't missing something that would screw up the generator, I called the Cyberonics therapeutic consultant and asked him if there was a problem with that. He said that as long as it triggers the generator when I swipe it, and that it doesn't somehow trigger it by itself there is no problem. Pretty cool, huh? Also, because it's a much less powerful magnet, I don't have to worry about it erasing credit cards and such. Perhaps I should design jewelry with an unobtrusive built-in magnet. Maybe some of the rest of you will want to try something like that if you don't like the ginormous Cyberonics magnet.

Onward and upward!

 

[Nakamova]

And you have a magnetic personality! You'd make a good spokesman for the magnet-jewelry...

 

[Cint]

And you have a magnetic personality! You'd make a good spokesman for the magnet-jewelry...

Haha!!

Personally, the magnet isn't that big of a problem for me so I never thought of buying another one. I don't wear it around my wrist/ankle nor do I keep it clipped to a belt. I just keep my magnet in my purse or pants pocket. I have auras so I do have enough time to retrieve it, usually. There is no way I am going to wear that ugly looking magnet around my wrist and have nosy people asking about it. My friends and family all know where it is and what to do, so I am satisfied. Last time I ended up in the ER, even the attending Dr. didn't know a thing about the VNS.

VNS magnet photo:

https://images.search.yahoo.com/ima...&sigi=114glsg5p&sigb=12c5nu5ql&fr=yfp-t-901-s

 

[SayThatAgain?]

Eeekkkk! Thankfully my magnet has a black sticker! I asked the rep/tech when he was in my neuro's office about it and he said they changed to black because patients said the colors drew too much unwanted attention.

btw, I believe Cyberonics is still doing their one free magnet set upon request!

 

[Cint]

Eeekkkk! Thankfully my magnet has a black sticker! I asked the rep/tech when he was in my neuro's office about it and he said they changed to black because patients said the colors drew too much unwanted attention.

btw, I believe Cyberonics is still doing their one free magnet set upon request!

When I had my first VNS installed back in 1998, the magnets where white, so I think the black ones do draw less attention. And back then, the magnets were just magnets, they weren't designed with clips to attach to your belts or bands to wear like watches.

And yes, Cyberonics does offer one free magnet upon request.

 

[arnie]

I've needed to use my magnet several times since yesterday, and I find it's really convenient to just reach inside my shirt and swipe the magnet. It might look a little funny to do that in public, but probably no worse than pulling it off my ankle, and quicker than getting it out of a purse would be. My plan now is to get an old watch, remove the guts, and stick a magnet in there. That way it would totally look like a watch and would be fast and pretty much unnoticeable to use. I've also found a source for small disc magnets that could be easily fastened to the inside of a watchband and allow for instant, undetectable swiping. I'm not really that concerned about people seeing me use the magnet, but speed is important, and there are times when you don't want to field questions from people about what you are doing, or, even if they ask no questions, have the distraction of finding the magnet and swiping. I'm really surprised that this issue doesn't seem to have been addressed before now, both for cosmetic and functional reasons. Also, there are times when you want to fasten a magnet over the generator to have it turned off for a while, and a smaller magnet would be much easier to put on with a small bandaid or piece of tape. All the better for those of us with chest hair! The Cyberonics rep told me about a woman marathon runner who made a special jogbra to hold the magnet. I'm sure that works OK, but a lighter magnet that could be temporarily taped to any bra would be preferable. Let's be on the lookout to see if Cyberonics sees the light and improves their magnets. Cyberonics billed my insurance company about $8,000.00 for the generator, so I think they could invest a little money in coming up with less hideous magnets. I'm on a mission!

 

[Nakamova]

I think the watchband or bracelet idea is brilliant.

 

[Cint]

Let's be on the lookout to see if Cyberonics sees the light and improves their magnets.

I'm sure they do see the light. As I said in my previous post, with the first VNS I had back in the 90's, the magnet was just white without anything attached to it to clip it to. The newer magnet is skinnier and smaller, not as bulky. Plus the VNS itself was much bigger and more noticeable back then. And no, I don't want folks asking me what I am wearing so I keep my magnet hidden. I already wear a MedicAlert bracelet. So I'm sure they've heard plenty of comments and are working on finding something plausible for everyone.

 

[Cint]

I think the watchband or bracelet idea is brilliant.

They already do have watchbands. See the link in one of my previous postings.

 

[arnie]

They already do have watchbands. See the link in one of my previous postings.

I looked at those, but they are still the immense magnets and, looking at them, people would wonder what the h--l they were. My idea is to have an actual watchband, even with an actual watch, with a much smaller magnet incorporated into the back of the band. Also, I don't think Cyberonics has ever considered that, because their rep seemed impressed by my designs and didn't say anything about existing improvements. We shall see!

Onward!

 

[valeriedl]

I asked my neuro about using a regular magnet, like the ones you have on your fridge, and he said that they really wouldn't work because they aren't as strong. But if Cyberonics told you they would work then it must be ok.

Yes you have to be careful what your magnet comes close to because it is so strong. It can do serious damage to computers, cell phones, credit cards and many other things. I used to keep it in my purse until I heard about this.

I keep mine hooked on the waist of my pants now. When I had it on my wrist it seemed to pull everything towards it which was very annoying. I really wouldn't want to keep mine on my ankle though. When I feel a seizure coming on I need to get it quickly and I'll usually be confused about what I'm doing so I don't think I'd be able to (or know to) get it off my ankle and up to my chest in time. The only time I have trouble figuring out where to put it is when I'm wearing a dress, so I've pretty much just started wearing skirts.

I asked my neuro about getting additional magnets. He gave me two boxes for free, each one had a clip on magnet in it and one that you can keep on your wrist or what ever. When I had my battery replaced the surgeon also gave me another box.

My husband keeps a magnet on himself when we go out. We have one on the fridge and he has one in the car that is looped around the turn signal lever in the car. My close family all have one, also usually kept on the fridge, and will take it with them if we go somewhere. If I go out with friends one of them keeps a magnet on them so they'll be able to use it if they need to then give it back when we get home.

 

[arnie]

I saw the watchband magnets they have, but the magnets themselves are still far bigger than they need to be, and if one wanted to be at all dressy, or even in business clothes, that big blue box on your wrist would be rather obtrusive. I got an inexpensive black velcro-type band and glued a black, 15mm circular magnet to it. It's not too noticeable and the magnet is powerful enough to work through a couple layers of clothing, but I doubt that it is strong enough to be a threat to computers or credit cards or such. Actually, I still like the pendant idea, too. Maybe I will take a picture of it and figure out how to post it here.

Cheers!