Epilepsy Foundation

Is VNS therapy effective in the long term? And does it change ones standard of living for the better? Iread that if i am on VNS i still must be on my meds, is this true -- if so, how long? I ask these questions because i am considering VNS Therapy.

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Comment by Alyssa Stepp on May 24, 2010 at 7:55pm
I got my VNS on March 16th of this year, so it's fairly new to me as well. However, my college roommate's husband has had it for several years & LOVES it, so talking w/him was one of the major deciding factors for me. Of course there are things about it that I don't like-I mean, they had to cut into my chest & neck, so there has been some adjustment/irritation/soreness. BUT, I haven't had a seizure since before having the surgery, and was just told by my doc at my last follow-up that she's comfortable with my settings & doesn't need to see me again until October!! (Unless I have a problem, of course.) My scars are healing great-I'm putting a scar serum on them & am keeping them covered when I'm in the sun, since I'm super-pale...they're still fairly pink, but I'm expecting they'll fade to white soon. My doc said I should be able to reduce my meds when I go back for my visit in October-I currently take Topamax 550 mg daily, Acetazolamide (Diamox) 500 mg approx 2 weeks/month & progesterone 2 weeks/month. (The progesterone was actually prescribed by my GYN for a different issue, but since I have primarily Catamenial Epilepsy, it can help control/prevent seizures.) I can tell you that since I've had my VNS, I have slept better-which is absolutely unheard of for me...I've struggled w/insomnia for years! I've also had more energy during the day, and have noticed a definite improvement in my moods (as has my family...Yay, Mommy's not so crabby!) It's a slow but sure process, and I'm still getting there. I know it's helping me to talk to other people who have been through the surgery, so if you decide that you want to do it, you may want to contact your local Epilepsy Foundation & see if they can put you in touch w/someone in your area who's been through it.
Comment by Southie on May 23, 2010 at 11:07pm
I never had VNS - but those who have had it while I am unable to provide their names:

1) VNS - was able to be off AEDS completely, now is waiting by law for a period
span before being able to drive.

2) VNS - was able to decrease AEDS, one was able to go "mono" and at
a low dosage of one per day (I think it is an XR - I would have to go back
and see if I still have that in the storage box in the email); is now fully
employed. {Have not heard from this individual since the party is working
10-12 hour shifts, married several years ago.}

3) VNS - one after prolonged period of time had to have it removed,
did attempt the decrease of meds, failed. VNS had to be removed due
to 'bad surgery' for after the party had moved to another State. (The
new Neurosurgeon saw the error - which cannot be corrected. Now
stuck with wires but sans the VNS which was removed.) Presently
undergoing another "newer" AEDS titration, getting rid of some old
"baggage". {This one here, I would imply that would be a rare case
of a blotched VNS surgery, but had it on for a long period of time.}

4) VNS - troublesome at first, finding the right momentum; then the
titration of decrease of 4 AEDS, starting with one after another, until
it was leveled down to just two AEDS at a low dosage. Not seen this party
online for a long time, last message received was back in University to
finish off and head to employment.

5) VNS - E-free and Med-Free - took nearly (I stand corrected if I am wrong)
4.5 years to get to that point of becoming AED free. That party only was
taking 2 AEDS, but of note, that party also had brain surgery as well.

6) VNS - removed - had been AED and "E"-free, keeps the VNS as souvenir
or paperweight (I forget what that party indicated).

There is some of the list of people I have had rapport with whom had
shared with me some of what they had underwent which I summarized
it for you - as you can see, it all varies from individual to individual;
except for several which we lost rapport in 2006/2007.
Comment by sparky triggers on May 23, 2010 at 9:08am
it is very helpful.my doctor told me it couldn't be removed.well-the surgeon and epi-most likely meant its not optional to have it removed un-less life threatening complications.i just read a few cases that it did have to be removed for infection and mechanical problems.any device there will be this.could be a heart valve one i suppose.anyway-surgery is permanent.it helps me and i really like angela's view.cyberonics has nurses during the week and casemanagers that can be called and they will talk with you and answer all they can.it does help with mood and depression too.the goal for me is-was to beable to decrease my medication and have the seizures be less frequent.less intense,less in duration.if they do stop that is going to be wonderful.it will be a combination of a full treatment plan though-not just because of the device .my opinion. sparky
Comment by Starlight on May 22, 2010 at 11:51pm
I got a VNS implant done in April, so it's still very new to me. It takes a few months to see a decrease in seizures, but when they decrease that's a long-term thing. So far, since it's still so new, I haven't seen a decrease in seizures yet, however I can use the magnet to stop a seizure when I feel it start or if I have an aura. So in that regard, yes it has already improved my quality of life. :) I don't go through a whole seizure and I don't have that overwhelming exhaustion/need to sleep afterward. Yes you do have to stay on meds in most cases, however some people are able to decrease them. (Not sure what the % is on that but I think it's significant).

The thing to be aware of, is that VNS doesn't work for everybody. The percentage is about 65% success rate. Don't know why that is. Usually the criteria for VNS therapy is if you've tried four or more drugs, have had epilepsy for several years, and the seizures are intractable (resistant to drug treatment).

Hope this helps.
Comment by Boomer Sooner on May 22, 2010 at 9:01pm
Hello, I am Boomer Sooner. I got my VN in 2000, and had a replacement in 2004.
It is working good, had helped me w/ afew very bad, complex-partial and convulsions.
The only gripe I have about it is that the VNS site is abit swollen, and the wire in my neck is irritating me abit.
My neurologist chack on it and the wire, and she said everything is o.k.
I'd recommend it to help control the seizures that drugs cannot.
All the best to you and your decision.

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