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Vagus Nerve Stimulator

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.

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epi doc want me to get vns

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

 

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

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

 

Vagus Nerve Stimuator

Hi, My name is Diana I live in Deer Park, NY.

I had my VNS put in on 4/13/04. Ihad high hopes but, of course I had to be in the rare section and its does nothing for me. My seizure come both the right and left temporal lobe so we knew it was a long shot. I was first schedule to have one of my temporal lobes removed but we found that the seizure were on bothe sides so that was out of the question and then I had the VNS put in. I spoke to one or two other patience that there seizures had stopped or slowed down alot. Like I always tease my husband and say I quess I just had to be so special so it didn' want to work for me. Well best of luck and keep me up to date on how things are working out for you.

Re: epi doc want me to get vns

I have the same type. I have been on all diffrent types of meds for years and years. I really haven't had side effects from any of the diffrent meds but let me tell you be careful on the topamax I was on for about 2 years and then started to get the side effects. Which 2 doctors have told me that it was normal for that to happen. I had gotten tingling and numbness in my feet/toes and fingers and also had it on my outside thigh. I would never use topamax again. I do have a vns and have used Keppra and Lamictal. I have read that they are 2 of the best meds out there. But I guess it all depends on the individual.

Good Luck.

Re: epi doc want me to get vns

 

I have both Patial and generalized szs adn am doing VERY well with the VNS and my szs have improved GREATLY.

 Neuro is impressed iwth response adn the quickness with hos it has happened.  I respond well to electrical therpay of an kind.  I used to have  TENS unit that I used for my Migraines and TMJ jaw pain but no more since I now havethet  VNS.

 I have Grand Mals, Petit Mals, Drop Attacks, Simple adn Complex Partial szs.

Works very well and I have had good luck with it.

 

nancy

Re: Vagus Nerve Stimulator

I am seriously thinking about it, meds do not work for me. I take them as prescribed but still have break-through seizures.

Re: Vagus Nerve Stimulator

I got my 3rd VNS in July my meds don't work to control me andbrain surgery didn't do the trick.
I wish you the best of luck though.

Belinda

(a)abort (b)fail (c)retry (d)throw computer against the wall

southern and proud of it

where ay

where in ur brain is ur epilepsy? mine is in the left temporal lobe, my doc is sending me to a research hospital in san fransico to do some extreme testing bc no one has been able to pin point where in the temporal lobe my seizures are coming from and they wnat to find out bc surgery is being considered by the doc. can u give me any advice?

Re: Vagus Nerve Stimulator

I've had the VNS since Oct, 2005 and have found it helpful. It seems to have cut down on the time it takes me to come out of a seizure. I don't think it has cut down on the number of seizures I have had. I have gone thru a number of med changes since the VNS was implanted. All in all, I am glad I have had it implanted, and would do it again. If you have any questions, don't hesitate to ask. Good luck.
((( hugs ))),
Barbie

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"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Vagus Nerve Stimulator

I actually had the VNS implanted in January, my seizures would come only once a month but in that one time a month i would have like 6-8 back to back grand mal seizures. They had tried me on 7 different meds w/o any luck, i'm still on valproic acid as well as the VNS and i've had only 1 seizure since, and it was because it wasn't really charged up yet. It has been a tremendous blessing, and am really pleased with it! good luck!

"And the truest sign of grace was this, From wounded hands redemption fell down,Liberating man"-David Crowder Band

Re: Vagus Nerve Stimulator

I have had a VNS since 2000, before then I had 2 brain surgeries. The VNS is helpful, patience is the key. I have had the battery replaced and now my system is sensitive and people are sensitive and the doctors are careful when to start the system. The first time it was 6 weeks. The second time it was much longer. I am at a real low setting but it is doing the trick. It is different but you have to get use to it and once you are used it you will notice mentally and physicallly how much better you are. I am more alert. The seizures are shorter and I can do more things. I am not perfect but I feel a lot better.

Re: Vagus Nerve Stimulator

I am lined up to have this surgery also and am nervous about it, but I feel like I have exhausted the medication route. I feel like the Doc can't give me anymore and make my family's quality of life and my own any better than right now...and I am still having seizures.

I am ready for the next step...this seems logical to me. I am hopeful.

Re: Vagus Nerve Stimulator

Well i can tell you from experience that i have had thevagus nerve stimulator since about 1999. i recently went in to have my vns replaced as the batteries lifetime was approaching its final usefulness. for me the vns has reduced my seizures dramatically and i am able to live a productive life. the vns has worked for me and it gives me an added sense of security knowing that i have it in me and working properly. Surgery for me was a breeze. i went in the morning and was out of the hospital by 11 am.

Re: Re: Vagus Nerve Stimulator

When is your surgery Donna? I just had mine on the 15th of Oct. I haven't had a lot of time for writing but I decided to keep the blog here updated with my recovery. :)

I agree with you about quality of life getting better. This was certainly an option I had thought about too when the surgery was brought up to me as well and it made sense after considering all of the pros and cons.

This has been a rough week for me because I'm trying to get back into the swing of things; I think I'm over doing it and getting a little tired. I'm trying to get stuff done for graduate school plus I'm rebuilding a web site. *sigh*

I hope you are doing well!

Sue

Re: Re: Vagus Nerve Stimulator

I feel now the same as you did last month as I am scheduled for the first appt. for the VNS surg. Also, for the past 7 months I have been prescribed 6 different drug combinations and the changes have only been for the worse.

I hope everything went well and you can advise.

Also, if anyone could advise how this affects the feeling in your throat and your voice? I would greatly appreciate.

Thanks & good luck all...stay positive.

Re: Vagus Nerve Stimulator

 

It affects your throat with a tingling or sore sensation right before it goes off.  You will get hoarse for those 30 seconds it is on, and will return to normal for the 5 minutes it is off.

 Nancy

Re: Vagus Nerve Stimulator

The VNS Message Board is a forum for VNS patients with lots of personal experiences and information.

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