Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

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: VNS clearly not for everyone!

Submitted by suebear on Sun, 2007-04-22 - 05:24
This option has been brought up to me again from my neuro. I do not forsee this as being something of a benefit to me and from what I'm reading it seems as though there have been more troubles than well worships. Reading this type of information helps me build a list of questions and determine the right steps to take for my health. Thank you everyone in posting comments on this issue!

Re: Re: VNS clearly not for everyone!

Submitted by birdbomb on Sun, 2007-04-22 - 12:19
Research all you can about VNS before making any decision. Talk to those with it implanted, not just those who have success. Keep in mind the material published by the company is marketing puffery. They want the VNS to look as appealing and as safe as possible. They gloss over possible side effects and omit information. The side effects can be very mild to life threatening and there is no way to tell who will be affected. www.vnsmessageboard.com

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

Submitted by suebear on Sun, 2007-04-22 - 22:49
I agree with you regarding the marketing fluff and no stuff concept. I'm actually taking a graduate class right now. The class has been covering marketing administration and we've been discussing how companies sometimes "pull over the wool", not all of course but sometimes it can happen. You are very correct studying the good, bad, and the ugly of all aspects regarding VNS is very important. I did bookmark the web site however Houston is not in my area as I am in the midwest - Iowa. Isn't that the manufacture that has designed the device? Which brings me to an interesting question, who has control of the device after it is implanted? My assumption is the neurologist and the patient, not the manufacture correct? I'm very familiar with there being possible issues raised after the procedure as each patient has their own specific situation. What may work for one does not always work for another, that is common sense. I've had a left temporal lobe removal in '95 so I'm all too familiar with serious surgery and risk. :) Thanks for your feedback!

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.