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VNS clearly not for everyone!

Tue, 04/19/2005 - 18:10
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: Re: Re: Re: VNS clearly not for everyone!

Submitted by birdbomb on Mon, 2007-04-23 - 04:26
The device is manufactored in Houston by Cyberonics. The company has been under fire from the SEC for granting stock options. there is lots of other nasty stuff in their history. The CEO resigned and the company is currently undergoing a major upheavel. Once the unit is implanted, the doctor and patient are the ones calling the shots, yet often there is a representive from the company present. If the patient has a very good response, Cyberonics is all over them asking them to be spokespeople. However, should the patient experiance any problems, Cyberonics quickly turns their back and steps away. Parents who implant their child will be told "user error" as it does not have FDA approval for those under the age of 12 for treatment of epilepsy and 18 for treatment of depression. VNS is a hotly debated topic to some. Those who have had good responses can't seem to understand those who have not. As of this date, my site is nearing 800 members. They come from all walks of life and from several countries. The range of success goes far and wide.

Re: Re: Re: Re: Re: VNS clearly not for everyone!

Submitted by kcech1975 on Tue, 2007-07-17 - 22:27
My husband had the VNS surgery about 2 years ago. At first his settings were to strong. It took the Dr. about 6 months to get the settings adjusted to what he was ok with. They have softer settings that do not bother him. His device goes of about every 3 minutes and is on a very soft pulse (strong strength. He has been on the softer pulse for about 1 year and his setting is on 2.5 He is on three different medications and is alot better.

Re: Re: Re: Re: Re: VNS clearly not for everyone!

Submitted by retiredinfla on Sun, 2007-08-12 - 01:46
This is a very dangerous procedure. The procedure/unit causes scar tissue that cause nasty side effects. I haven't been able to breathe for many months and have been on oxygen as a result of the implant which I recently had removed.ANd this is all with it OFF!!!!! There is a class action lawsuit against the company based on false test information supplied by Cyberonics to the FDA. God Bless those of you who have had success, but all please be careful. If anyone has problems with this and needs more information on the lawsuit or side effects I am suffering, please email me at kdr770@comcast.net. God Speed!!

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