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VNS such a big deal?
Mon, 12/01/2008 - 01:31I have partial seizures and I am considering the VNS and was wondering if anyone in the group has one. I think insurance will cover it so cost isn't an issue. So aside from that what are your thoughts on it? How did it help your seizures, how long did you have to stay out of work, pros and cons, etc...
I asked my neuro about it and he kind of freaked. Which I thought was kind of odd. I mean, is it really that big of a deal? Because to me, the benfits sound like it is worth it. Yeah, I will have a device implanted in me and the wire to it will be permanently stuck to a nerve. I get that that is kind of a big deal, but I don't see why it should leave it as almost a last resort! People get metal stuck in their bodies for much more minor reasons, don't see how this is much different. He also doesn't seem to think that they are severe or bad enough for it. Yeah, I only have one every few months now, but when I do have them it makes me feel like crap and interferes with my life. I know the after effects only bother me for a few hours, but I plan on going to medical school in a couple of years. And missing out on half a day of stuff is a problem when it interferes with classes and studying.
I knew I wouldn't be able to get MRIs if I were to get one. And my neuro mentioned it. That is one of the reasons he was concerned about it. That would be kind of a bad thing since I have had to have a few MRIs for my back, but there is always CT scan instead. I heard about the voice change too, I don't think it would bother me all that much. But does it soften the voice or deepen it? I don't think either would bother me...my voice isn't very deep or high anyway so I don't think it would throw it to an extreme. And I have allergies so I and people that know me are probably used to hearing it change a little from that already, lol!
I'm just thinking that since I have auras right before they happen and since I stay aware, it might be helpful. When I know it's about to happen I could use the magnet to try to stop the seizure. Which for me would be a blessing. Pretty much anytime they happen I have to stop what I am doing for 15min-30min, sometimes an hour, to recover since I feel all odd, sick, and a little disoriented afterwards.
So then really, the cons of it is just the stuff that is posted everywhere else? Like change in voice, it is something implanted, the wires can't be removed even if the device is taken out, and sometimes it causes discomfort?
Not to sound like an ass....but my neuro is freaked over those things??? Seriously? I'm would be willing to go for it if that is it! I'm fine with a little voice problem if it can greatly improve my seizures. It's not like I'm a professional singer or speaker.
Comments
Re: VNS such a big deal?
Submitted by desert_rose73 on Thu, 2009-01-15 - 16:05
HI I have the VNS and have had it since sept 20th of 07. I have intractable epilepsy . Most meds don;t work for me and my szs were out of controlI am on my 3rd neuro. he is just great to me and told me I had no choice that I was goingto have the VNS whether I watned it or not.Beforet he VNS was in the picutre I was having 10-12 or more szs a day, and was just ugly. I take 4 meds.Now that the VNS is in the picture I just turned in my latest log to my neuro and in 100 days I only had 9 szs. have Complex Partial szs with auras. My auras are obnoxious and nasty. I have about 30 seconds between aura and sz. But I use my magnet and it is just a matter of the right timeing to get that aura zapped and the sz stopped.I wear one on my wrist all the time and one on my waist band as well for quicker retrieval. The only sdie effects I ahve from it are coughing and voice hoarseness. Yes it changes your voices for teh 30 seconds your device is running. and goes back to normal for the 5 minutes it is off.Most VNSs are set at 5 minutes OFF adn 30 seconds ON. But your neuro can set it how he wants with his computer that is part of the VNS machine and the wand that you will have to hold over the VNS. He will be abel to tell how many swipes you made, what time of day you did it, and the date. He can tell how much powere is left on the battery, and stuff like that by reading the VNS throug the wand My amsp ae at 2.0 and he is not turning it up anymore. The stimulator has a sillicone lead that is wiggled through the sin of the neck and under the collar bone up to the Vagus nerve and the 3 wire electrodes are wound around the nerve. BEWARE you can not use the microwave if you get thei done. It will makethe elctrodes hot and damamge teh nerve.
Nancy
HI I have the VNS and have had it since sept 20th of 07. I have intractable epilepsy . Most meds don;t work for me and my szs were out of controlI am on my 3rd neuro. he is just great to me and told me I had no choice that I was goingto have the VNS whether I watned it or not.Beforet he VNS was in the picutre I was having 10-12 or more szs a day, and was just ugly. I take 4 meds.Now that the VNS is in the picture I just turned in my latest log to my neuro and in 100 days I only had 9 szs. have Complex Partial szs with auras. My auras are obnoxious and nasty. I have about 30 seconds between aura and sz. But I use my magnet and it is just a matter of the right timeing to get that aura zapped and the sz stopped.I wear one on my wrist all the time and one on my waist band as well for quicker retrieval. The only sdie effects I ahve from it are coughing and voice hoarseness. Yes it changes your voices for teh 30 seconds your device is running. and goes back to normal for the 5 minutes it is off.Most VNSs are set at 5 minutes OFF adn 30 seconds ON. But your neuro can set it how he wants with his computer that is part of the VNS machine and the wand that you will have to hold over the VNS. He will be abel to tell how many swipes you made, what time of day you did it, and the date. He can tell how much powere is left on the battery, and stuff like that by reading the VNS throug the wand My amsp ae at 2.0 and he is not turning it up anymore. The stimulator has a sillicone lead that is wiggled through the sin of the neck and under the collar bone up to the Vagus nerve and the 3 wire electrodes are wound around the nerve. BEWARE you can not use the microwave if you get thei done. It will makethe elctrodes hot and damamge teh nerve.
Nancy
Re: VNS such a big deal?
Submitted by daniesbrwneyes on Thu, 2008-12-18 - 00:34
I had the vns my insurance when i got it in 2001 convered it an it has helped me tons. I have went to having no granmal seizures to very little mild seizures. I go to doctor once a mnth for it an everyone i talked to except few is glad they got it . Some ppl got off meds some are like me still on meds. Its your body you have to take choice. it takes while to get use to in you but i think its worth it. Not everyone is eligable for the vns.