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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 rikk on Thu, 2008-12-18 - 00:15
Re: VNS such a big deal?
Submitted by Cynthia10 on Thu, 2008-12-18 - 00:27
Thanks for the responses!
I'm actually in the hospital now for the video EEG to confirm seizures and where they are comming from. Maybe something good will come of it.
Thanks for the responses!
I'm actually in the hospital now for the video EEG to confirm seizures and where they are comming from. Maybe something good will come of it.
Re: VNS such a big deal?
Submitted by dmayes2 on Wed, 2008-12-17 - 12:16
Hey Cynithia
My wife had the VNS surgery about 1 year ago. The surgery itself was done in a day and went home same day. My wife took a couple of days off work to recover from the bruising. As far as insurance goes, ours payed the entire $36,000. So you shouldnt have to worry about any expense. My wife has seizures every two weeks and generally around the same time. She had tried eery medicine out there and nothing worked for her. Our Dr told us about the VNS and didnt seem all that concerend. HE actually felt it was a simple precedure. He even said there using it to treat people with depression now. We went to Emeory insitute in Atlanta, Dr Gross did the procedure, he had completed over 2000 of these type surgeries. Many Dr do this now but I would recommend getting someone with experience in neurology. The Vagus nerve is very sensitive and you dont wont to risk damaging it with scare tissue from the surgery. The incession on her neck is slightly noticable, at about 3 inches long on her neck and she requested the unit itself be placed near the arm pit instead of the upper chest. He scare is starting to fade but is still noticeable. So far the VNS hasnt helped at all. There has been no change in her seizure so far but it could take as long as 3 years for it to work. Thats what her Dr told us anyway. Each month her Dr turns the device up to a stronger setting, she is set currently at 3 which is middle. Its alittle painful when it goes off at this point. She is going to ask him to turn it back down. The best I can explain it to you is that it is a sore throat feeling. Her voice sounds raspy or hoarse when it is activated aswell. This all sounds like it isnt worth it; but if theres a slight chance that it may help her, it will be worth it. I would strongly reccomend you talking to your Dr about why he is freaking out about it, he may know something i dont. As for the magnet... my wife has no auras, my wife cannot sense its coming on what so ever. I have used the magnet on her myself during a seizure, but it does nothing for her. The only thing that is beneficial about the magent is that she sings in a choir and can use it to turn off the device when needed. I dont know if you have checked into the % of the VNS but it helps about 1/4-1/2 of patients some. I dont want to sound negative about this procedure, becuase I still have faith that it will help her one day. Well if there is anything else i can explain or help you with in regards to this let me know. You can email me at dukem@live.com. Hope this helps
Hey Cynithia
My wife had the VNS surgery about 1 year ago. The surgery itself was done in a day and went home same day. My wife took a couple of days off work to recover from the bruising. As far as insurance goes, ours payed the entire $36,000. So you shouldnt have to worry about any expense. My wife has seizures every two weeks and generally around the same time. She had tried eery medicine out there and nothing worked for her. Our Dr told us about the VNS and didnt seem all that concerend. HE actually felt it was a simple precedure. He even said there using it to treat people with depression now. We went to Emeory insitute in Atlanta, Dr Gross did the procedure, he had completed over 2000 of these type surgeries. Many Dr do this now but I would recommend getting someone with experience in neurology. The Vagus nerve is very sensitive and you dont wont to risk damaging it with scare tissue from the surgery. The incession on her neck is slightly noticable, at about 3 inches long on her neck and she requested the unit itself be placed near the arm pit instead of the upper chest. He scare is starting to fade but is still noticeable. So far the VNS hasnt helped at all. There has been no change in her seizure so far but it could take as long as 3 years for it to work. Thats what her Dr told us anyway. Each month her Dr turns the device up to a stronger setting, she is set currently at 3 which is middle. Its alittle painful when it goes off at this point. She is going to ask him to turn it back down. The best I can explain it to you is that it is a sore throat feeling. Her voice sounds raspy or hoarse when it is activated aswell. This all sounds like it isnt worth it; but if theres a slight chance that it may help her, it will be worth it. I would strongly reccomend you talking to your Dr about why he is freaking out about it, he may know something i dont. As for the magnet... my wife has no auras, my wife cannot sense its coming on what so ever. I have used the magnet on her myself during a seizure, but it does nothing for her. The only thing that is beneficial about the magent is that she sings in a choir and can use it to turn off the device when needed. I dont know if you have checked into the % of the VNS but it helps about 1/4-1/2 of patients some. I dont want to sound negative about this procedure, becuase I still have faith that it will help her one day. Well if there is anything else i can explain or help you with in regards to this let me know. You can email me at dukem@live.com. Hope this helps