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VNS threapy: Is it for me?

Thu, 07/14/2005 - 15:15

Topic: Surgery and Devices

Hello All,I am a 40 year old male who has had E all of my life. I am dealing with it well, sometimes (like all of us), I wish I didnt have E. I know that is selfish for there are people worse off then me.I been on all kinds of meds from phenobarb to dilantin (including Tegertol). I was recently taken off Dilantin due to the results of my first bone scan (why my previous doc didnt order one is a different story.My wife sent away for info on VNS threapy. From what i read about it, it sounds good (the info they sent to me), but have heard stories that it can do more harm then good.In this fourm, lets talk about our E and if you had any dealings with VNS. We are here to learn from ourselves and others.I, as well as other people, would like to hear your input about this threapy. It may give some of us some ideas what is out there for treatments.Thank you.Erik

Comments

RE: RE: VNS threapy: Is it for me?

Submitted by EHammarstrom on Thu, 2005-07-14 - 15:15

I heard that the surgery was risky. That was a while ago. I am pretty sure it has been worked on and has got better. What I think about of the surgery, is that you are awake through the whole thing, not sure I could handle that.I think all treatments have the risks. Not everything is for everyone. And the question is, "Will it make life better for me?"When I first heard of the surgery, and asked my then nero, he told me it could be a 60% - 40% chance, and that was a 60% chance I be in a wheelchair for rest of my life.I am sure the surgery has better odds these days, but sure it has it side effects. I was reading htat VNS has side effects also, so I guess everything comes with something.I was talking to someone from this board about VNS, he gave me this URL to a VNS chat board.I am not sure if this is going to let you click on it, if not just copy and paste it. http://s4.invisionfree.com/VNS_Message_Board/index.phpErik

RE: RE: RE: VNS threapy: Is it for me?

Submitted by EHammarstrom on Sun, 2005-07-17 - 11:40

Sorry folks for the double post....... Dont know what or how it happened.Also can anyone tell he how to post a URL? you can tell me on yahoo IM @ ErikHammarstrom2004 or at my email.Erik

RE: VNS threapy: Is it for me?

Submitted by grez-monkey on Thu, 2005-07-14 - 15:09

Erik,

I'm going to go ahead and post the same website address I gave you on our yahoo instant message chat today.

http://s4.invisionfree.com/VNS_Message_Board/index.php?act=idx

Folks, this website is the VNS Message Board. Created by one individual on another popular epilepsy community forum.

I'd like to recommend to everyone that you look through the VNS message board, AND research everything you can locate about the VNS, before you let the doctor to make the decision for you.

There is another product that is still currently in it's clinical trial phase. It is the RNS (responsive neurostimulator). Also an implant but it goes into the head itself. According to one neurophycologist's explaination, it's like a tiny eeg monitor that can pick up when you may have a seizure, 30 to 45 minutes BEFORE the seizure would take place. The RNS will be sending out a signal which should control the seizure, preventing it to take place. More about the RNS can be located at www.neuropace.com

Bruce J