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VNS clearly not for everyone!
Tue, 04/19/2005 - 18:10Topic: Surgery and Devices
I had to post this here as I posted in the General Folder but I find this a good place this. I had the VNS implanted last Fall, lost my voice for 8 weeks due to vocal cord paralysis, once back I could tell that my voice/throat were far from being thealed . It left me very uncertain I would ever turn it on and so 6 mnths after having more seizures, I had it set at the lowest setting, we increased it slightly and had to return the setting to the lowest possible as I was too sensitive to it. I was choking,hoarse,not sleepy well,had an overall feeling of listlessness my cognitve functions were cloudy and extreme fatigued all of this is unusual for me.Over the 5 weeks that I had the VNS on, my seizures increased from a norm of about 4-5 a month to having 18 in a five week period, something I have ever experienced in 36 years of Epilepsy. I could not tell you it was solely because of the VNS and will maybe never know. So on tuesday of this week I had the VNS turned off, since then in tow days time others have noticed I am back to my real me and many of the above symptoms I was feeling are reduced, gone or getting much better. It is like day and night. I truely feel like a different person. I now feel certain I will never use it and have the battery pack removed. I feel it important to say here that for some it is a wonderful improvement over the seizures they are having. For them I truely am happy and wish I could have been one of those. but I know there are many unsure if it is right for them or how it could impact them. SO as an advocate of why it is important to know all you can both the pros and cons of this options . Which I honestly can say I did not know enough and for this I regret it greatly. Plus knowing human stories of what happens for others.May each of our Journeys be lightened by our proactive learning. Best to all out there!
Comments
Re: VNS clearly not for everyone!
Submitted by littleone on Sat, 2007-08-25 - 16:24
I am sorry of what happened to you, maybe with God willing sometime soon there will be another breakthough so that the VNS or something like it can, and will be used for all with seizure disorders. I too had the VNS put in and I too had it turned off. Yes I agree that for some it is a life saving device but there are others for which it is nothing but a heartache. That sounds like you and me. I had it put in when it was in the experimental stages. So there were no pamphlets or films to watch on the VNS. I was told at the time I might be one of the lucky ones that the VNS might stop SOME of the seizures (the doctors were not sure), the chances were 50-50. I could either have a reduced amount of seizures I was having or I would be a complete paralalzed vegetable. I was not guaranteed either way. But since there are no guarantees in life and the seizures I was having (sometimes 5 to 6 daily) was not subsiding I decided to go ahead with the surgery. Like you, immediately after following the surgery for and about the next 5 weeks I could not talk. I was listless and tired all the time, and even had to take more medicine to counter act the side effects of the VNS. At that time I was taking about 20 pills a day. So after about more 3 years of trying and trying to get the VNS to work, I had it turned off. I am now able to talk all the time without my voice fluxuating, I am not tired or listless or on the additional medication I can feel like a normal human being again (if there is such a thing. It really can and does work wonders in some Epileptics I just wish I was one of the lucky ones if it would have even worked 1 fragment of how it was supposed to I would have left it alone, and I only take 8 pills a day, now my seizures are down to 2 wihtin 6 months. THATS FANTASTIC!!!
I am so sorry you are having
Submitted by birdbomb on Sun, 2007-08-12 - 04:46
I am so sorry you are having to deal with this, you are not alone. Many others have been damaged and mislead. I developed life threatening Severe Obstructive Sleep Apnea and nerve damage. The VNS Message Board "If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)