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Vagus Nerve Stimulator

Sat, 07/21/2007 - 13:56
Has anyone else ever had a Vagus Nerve Stimulator implanted in their chest? I had one implanted at the end of June. However, it still needs to get turned on. The doctors were just waiting until after I am healed.

Comments

epi doc want me to get vns

Submitted by banffgirl on Sat, 2007-12-15 - 09:40

well i went to my epi doc beginning of dec and he was really pushing the vns since my seizures have continued to get worse and worse. i have been uncontrolable for 4 1/2 years and taken every med available. so since i was such a nervous nellie about commitig to the vns even if he said it would improve my quaility of life and keep me out of the er or at least cut it way back. that in its self sounds good, surgery doesnt. plus when my hubby asked what happens if it doesnt work, he said they remove the battery pack only since they dont like to take the chance with removing the wire and possibly damaging the nerve. right now i am being changed from zonegran and keppra to topamax and lamicital since together the chemical reaction works well for my type of e. took both of them  in the past but not together.

what worryies me is i have primary generalized seizures which is all over the brain at once so does anyone out there have a vns with that type of e?

thank you in advance for your help!!!!!!

banffgirl

well i went to my epi doc beginning of dec and he was really pushing the vns since my seizures have continued to get worse and worse. i have been uncontrolable for 4 1/2 years and taken every med available. so since i was such a nervous nellie about commitig to the vns even if he said it would improve my quaility of life and keep me out of the er or at least cut it way back. that in its self sounds good, surgery doesnt. plus when my hubby asked what happens if it doesnt work, he said they remove the battery pack only since they dont like to take the chance with removing the wire and possibly damaging the nerve. right now i am being changed from zonegran and keppra to topamax and lamicital since together the chemical reaction works well for my type of e. took both of them  in the past but not together.

what worryies me is i have primary generalized seizures which is all over the brain at once so does anyone out there have a vns with that type of e?

thank you in advance for your help!!!!!!

banffgirl

Re: Vagus Nerve Stimulator

Submitted by desert_rose73 on Fri, 2008-02-15 - 09:32

 

I have  VNS and got it on Sept 20th of 2007 and mine was turne on immediately after surgery before I ever left the OR.

 Mine was turned up 2 weeks later at at very slworate then my neruo started at quarter amps and I am right now at 1.75 amps.

It its working VERY well at controlling my stubborn and medically intractable szs.  I have 5 types.  T/Cs, Absences, Drop Attacks, Simple and Complex Partial szs.  I have Frontal Lobe Epilepsy.

HE told me thta because I am responding so wel adn ffaster thaeeean he exoepected to se happen thati amight bein that lucky 5% of the sz-free population on the VNS and lower doages of medication.  We are getting closer adn closer to this goal.

 I wear a magnet on my wrist and carry the extra one with me everywhere I go jsut incas I can't swipe my self.  THen sommone else can do it for me and it has happened.

The last log I turnerd into my neuro had 10 sz-free days in it and 4 days with szs adn one night iwth a szs in it.  Considering where i was when you had yourse put in wit non-stop szs all thet iem almost everyday  I have come along way. and he thinks so too.

IT took less than one hr to do my surgeyr and I wa sent hoem the same day with it already running.

The neck part of the surgeyr was the most pain ful. 

The chest part decidedto pull open and rip outthe sticiches insdie adn I had to go back toteh surjeopn andhave it steri-stripped back to gether for antoehr 5 weeks not to metnion it got infected adn had to have it cleaned out but it healed with a keloidbutI can live with that.

I see my neruo every 3-5 weeks to get it turned up more adn he makes me keep a running log every time as well.

 Nancy

 

I have  VNS and got it on Sept 20th of 2007 and mine was turne on immediately after surgery before I ever left the OR.

 Mine was turned up 2 weeks later at at very slworate then my neruo started at quarter amps and I am right now at 1.75 amps.

It its working VERY well at controlling my stubborn and medically intractable szs.  I have 5 types.  T/Cs, Absences, Drop Attacks, Simple and Complex Partial szs.  I have Frontal Lobe Epilepsy.

HE told me thta because I am responding so wel adn ffaster thaeeean he exoepected to se happen thati amight bein that lucky 5% of the sz-free population on the VNS and lower doages of medication.  We are getting closer adn closer to this goal.

 I wear a magnet on my wrist and carry the extra one with me everywhere I go jsut incas I can't swipe my self.  THen sommone else can do it for me and it has happened.

The last log I turnerd into my neuro had 10 sz-free days in it and 4 days with szs adn one night iwth a szs in it.  Considering where i was when you had yourse put in wit non-stop szs all thet iem almost everyday  I have come along way. and he thinks so too.

IT took less than one hr to do my surgeyr and I wa sent hoem the same day with it already running.

The neck part of the surgeyr was the most pain ful. 

The chest part decidedto pull open and rip outthe sticiches insdie adn I had to go back toteh surjeopn andhave it steri-stripped back to gether for antoehr 5 weeks not to metnion it got infected adn had to have it cleaned out but it healed with a keloidbutI can live with that.

I see my neruo every 3-5 weeks to get it turned up more adn he makes me keep a running log every time as well.

 Nancy

types of seizures

Submitted by annielane on Fri, 2008-01-11 - 16:42

i have been having 4 dif types of seizues (including gan mal) since i was 14, iam know 25. no doc has found any abnormalities in my brain on any test untill about aug, sept, when a doc from stanford diagnosed me 3-4 mons ago with my 4th or 5th eeg, this time taking me completely off all my meds while hooked up to the eeg. i have tried practicly every med in the last 11 yrs and have cut down from 30 seizures a day to about 3-10 a wk, i am going to get the vns soon and id like to talk to some of you about it

 

i have been having 4 dif types of seizues (including gan mal) since i was 14, iam know 25. no doc has found any abnormalities in my brain on any test untill about aug, sept, when a doc from stanford diagnosed me 3-4 mons ago with my 4th or 5th eeg, this time taking me completely off all my meds while hooked up to the eeg. i have tried practicly every med in the last 11 yrs and have cut down from 30 seizures a day to about 3-10 a wk, i am going to get the vns soon and id like to talk to some of you about it

 

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