Who Has Had Deep Brain Stimulation, Has Had A RNS And/or VNS Implanted? | MyEpilepsyTeam

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Who Has Had Deep Brain Stimulation, Has Had A RNS And/or VNS Implanted?
A MyEpilepsyTeam Member asked a question 💭

How helpful has had LNS, VNS, and/or Deep Brain Stimulation been for you ? How successful was any that you have had for you? Score 1 = being great (long-term seizure free state) and 10 being a failure and more trouble than what it was worth
How many time per year are you having some battery replacement or other maintenance for LNS or VNS?

NOTE: Here is some details about each from the Epilepsy Foundation: https://www.epilepsy.com/treatment/devices

As much details of your own experience… read more

posted July 12, 2022
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A MyEpilepsyTeam Member

I'm satisfied with keppra controlling my seizures and not willing to have an operation. My decision was also confirmed by the responses of those that have had the operation.

posted July 13, 2022
A MyEpilepsyTeam Member

I've had the VNS for maybe 7-8 years now and it does help. Once in awhile during auras I use the magnet and possibly prevent one from happening and other times loved ones use it on me while seizing and it helps stop them now and then. I've gone a year without any a few times but they haven't stopped. It really does make a difference for me because unfortunately meds rarely do. I have mine every month or so maybe 2 if I'm lucky. I'd recommend VNS though honestly cause doctor's aren't miracle workers ya know? Of course they're paid like they are though but doctor's don't cure things...they profit off of them and help now and then.

posted October 18, 2022
A MyEpilepsyTeam Member

I had my VNS stimulater the first one had for Long time I feel something like inside on my left side no it didn't hurt but anyway feel long had it over five years or longer I made a appt to see my Dr about it Dr check
the battery was dead so I went to
My Dr appointment they replaced the battery I ask him a question about it is going to be the same he said yes
So I had another battery replacement it the
Same ha it another
One after five years
That gone by after
The years I another one put in they have told me it'll be just a slight small
But a little stronger
One they have to I
Forgot
Up the power feels better but I still have my seizures
I believe it type of
Seizures I get it's
Tonic clonic generalized seizures still taking
Certain meds high MG each meds not
To many certain meds high MG about 2,3 meds doing better except for one time in my life I had seizure was a grand mal I remember what Dr have said to me my body would stiffen went down hit my head on table made out of wood I was down
I couldn't move a muscle I thought I was paralyzed for
Quite a while couldn't move period no damage
No cuts just couldn't move period for a while then I got up sat down and relax that was the first time that happen
In my life later I felt
I was ok never forget what happens that day

posted August 15, 2022
A MyEpilepsyTeam Member

I have the VNS, and an seizure controlled, i have a computer check up every 6 months, and have had my VNS for over 12 years with one battery change about 2 years ago. If you have a seizure you swipe a magnet watch over the device in my chest, and it sends a shock to ny brain stopping the seizure. Hugs

posted July 25, 2022
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
Your rating sounds exactly like mine. I still have the leads in my neck too

posted July 13, 2022
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