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VNS

DOES ANYONE HAD ANY BAD EXPERIENCES WITH THE VNS?I AM PLANNING ON HAVING IT DONE AROUND MARCH 16TH IN INDIANAPOLIS,INDIANA AT ST.VINCENTSHOSPITAL.MY SURGEON CLAIMS HE DOES AT LEAST 2 AWEEK.I WOULD GLADLY LISTEN TO ANY ADVICE OR IN-FO.THANKS

Comments

RE: VNS

Hi, I saw that you were going to have the VNS surgery done back in Feb.  Did you ever have it and do you have any info. for me.  I had the right temporal lobe lobectomy done last Sept, and it didn't work 100 percent, so, I'm planning on going to the next step.  I'll take any information, please.  Thanks.

RE: VNS

                                     Hello Bandcheryl,        My name is Mickey Naschke I have had Epilepsy for 20 years I am now 30. Four years ago in August 2000 I had the VNS put in. It has been nothing but a sucess for me. I just joinned Epilepsy.com and I would be more than happy to share any info with you about The VNS and my hole experience because as I saud helped change my life for the better so if you would like feel free to email me and if you have any other questions I like meeting Epileptics from all over the world and sharring a positive story about having Epilepsy. I hope to hear from you.                                                                                                             Sincerley,                                                                                                                       Mickey Naschke                          mickeynashke@yahoo.com

RE: RE: VNS

Hi,  You should know that in the vns, there is there the rule of 3. e.g. in on third of the cases it won't help at all, in one the third it will cut out all seizures, and in one third it will cut down on the number of seizures.  As for myself, it as allowed me to cut down on the number of meds I take.  Also, my seizures are less frequent.  If I may add a postscript, a number of countries are also using it for depression. 

Re: VNS

I had the VNS implant along side my brother in 1999. It does not work for me on a everyday basis, however it does cut down on the severity of my seizures when someone is home or wherever I am to use the magnet. My brother on the other hand it made his seizures worse. He had to get the implant removed, not just because it did not work but also because it malfunctioned. My brother and myself were the first brother and sister to recieve it in the state of MD and we were guinney pigs because supposedly our seizures aren't bad. Wll anyway I hope that this comment was some help.

Laura

Re: Re: VNS

Can you give me some info about it malfunctioned for your brother? What were his symptoms? I had to have mine turned off because I suspected it was causing problems. I have also found out that it may have been turned up in current output too soon. I want to find out as much as I can from others' symptoms and experiences. Thanks for the input and good luck!

Re: Re: Re: VNS

IVE HAD MY VNS IN SINCE 92 IT WORKS WELL FOR ME WHEN I FEEL THEM COMMING ON IT STOPS THEM I WOULD SAY 90 PERCENT OF THE TIME AT THE BEGINNG IT WAS HARD TO GET USE TO BUT YOU DO NOW I DONT EVEN KNOW I HAVE IT UNLESS I USE THE MAGNET MY NICE HAS ONE ALSO BUT IT HARD TO TELL IF WORKS FOR HER AS SHE IS A TOTAL CARE PERSON .BUT I WILL SWEAR TO IT HELPING ME. MIKE

Re: Re: Re: Re: VNS

I am happy that it works for you Mike. I would never in a hundred years have another one put in. It really didn't do a whole lot for my seizures and the magnet was really no use because by the time I went to get it and use it I was already into the seizure. I absolutely hate how it changes my voice while it is on for 30sec. I sound like a retard on the phone. It has effected my swallowing of liquids. I nearly choke lots of times while swallowing. I hate to sound negatively towards it but I haven't had anything buy bad come from mine. I has left me scarred for life and my chest hurts in the area where it was implanted all the time.
I go for my RTL surgery the second week of October and my surgeon says that I should have never had it put in, that my neurologist should have had me have the RTL surgery done 10yrs ago. He also said that the VNS implants are highly over rated. Those are his words not mine.
But again, I am very happy that you are pleased with yours and that it is working for you. I hope it keeps working well and that
you don't have anymore seizures.
Cathy

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