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I'm considering VNS
Fri, 12/15/2006 - 14:01I'm from Puerto Rico and I'm considering VNS therapy for my E. I have had E for 26 yrs. I have been on 13 different meds over the yrs. Now I am on Keppra and Zonegram. My sz have never been controled ( complex partials).
I want to know what to espect; what should I ask my dr.
I want to know your experiences.
thanks for your time.
Ivis
Comments
Re: I'm considering VNS
Submitted by cath_y on Thu, 2006-12-21 - 18:24
Hi Ivis,
Just a quick note on the vns. Make sure your research isn't really
from a company who makes the vns, because they are out to sell sell sell. They will tell you all the positives and how great they are and how great they work, when in all reality if you talk to the surgeons who implant them, they will come out and tell you they are much higher rated then they should be. I actually had mine removed yesterday by the surgeon who put it in by orders from my past Neurologist. He told me he was only doing as she said. Then the surgeon that did my right temporal lobectomy said they are use less.
I think it is in your best interest to talk to REAL people who have lived with them in their chest. I have actually heard of people turning them around and around and around til they pulled the wires right out of the nerve that they were attached too. Just be carefull who you ask. I wouldn't want you to have to go through all the pain like I did, just to have it taken out.
Good luck,
Cathy
Re: I'm considering VNS
Submitted by jamie crowell on Fri, 2006-12-22 - 21:51
Hi Ivas, I have had the implant in for 5 years now I still have seizures. It is probably good if you have auras before a seizure then you can swipe the magnet to may be stop it. I don't have auras but because it is constantly on i don't know how many seizures it might have stopped. -Jamie crowell If you decide to have it feel free to email me and let me know how you are doing and the problems you may have fom it. Jamie crowell
Re: Re: Re: Re: I'm considering VNS
Submitted by bolland on Sun, 2006-12-17 - 14:35
Hey ....... I actually have a VNS. I have had this form of seizure therapy present for the past few years. I have spoke on behalf of a local hospital to explain to others what it is like having one. So feel free to ask questions if you like. I will help in anyway I can. Best of Luck !