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Vagus Nerve Stimulation Therapy
Tue, 02/01/2005 - 00:45I am looking for some one that has had the VNS implant procedure done. My family is considering the procedure for my brother and we would like to speak with someone that has had the procedure done and would be willing to share their success or failure with this device. We have done much research on the web, however most if not all of the information is provided by Cyberonics who sells the device and physicians who perform the procedure. Of course the information that we are getting from Cyberonics is that it is the miracle cure for seizures and the physicians only know about "studies". If there is anyone out there that could share, we would greatly appreciate it.
Best Regards,
Rod
Comments
RE: Vagus Nerve Stimulation Therapy
Submitted by Jackie on Sat, 2005-01-29 - 17:36
My son has had the VNS implant for almost 2 yrs. now, he had it done at age 3. Honestly I wouldn't hesitate to do it again although we still have cycles of up and down with seizures I feel they are easier to get under control. He does not speak, we assume the VNS is on when he "purrs". He was very sensitive with any changes the neurologist did at first so we are doing gradual changes with time on/off and the output. We just made a larger change than usual yesterday and he seems to be doing just fine. An ENT did the surgery and his implant is hardly noticable except one area in the neck is visable where the wire is attached to the nerve. My son also has a diagnosis of Lennox-Gastaut with Lissencephaly. We are reconsidering the Ketogenic diet now with hopes of lessening the number of seizures from daily to weekly maybe even monthly. Good luck. The resource nurse at Cybrotronics has been very helpful in our journey.
Jackie
My son has had the VNS implant for almost 2 yrs. now, he had it done at age 3. Honestly I wouldn't hesitate to do it again although we still have cycles of up and down with seizures I feel they are easier to get under control. He does not speak, we assume the VNS is on when he "purrs". He was very sensitive with any changes the neurologist did at first so we are doing gradual changes with time on/off and the output. We just made a larger change than usual yesterday and he seems to be doing just fine. An ENT did the surgery and his implant is hardly noticable except one area in the neck is visable where the wire is attached to the nerve. My son also has a diagnosis of Lennox-Gastaut with Lissencephaly. We are reconsidering the Ketogenic diet now with hopes of lessening the number of seizures from daily to weekly maybe even monthly. Good luck. The resource nurse at Cybrotronics has been very helpful in our journey.
Jackie
RE: RE: Vagus Nerve Stimulation Therapy
Submitted by kds8465 on Mon, 2005-01-31 - 14:04
I have a 7 year old daughter who has drop seizures since age 1. We have tried 8 different medicines.
We are planning to have the VNS implanted next month, I am a little scared. I know this is the right
thing. What are the pros and cons of the surgery. Thanks
Kelley
I have a 7 year old daughter who has drop seizures since age 1. We have tried 8 different medicines.
We are planning to have the VNS implanted next month, I am a little scared. I know this is the right
thing. What are the pros and cons of the surgery. Thanks
Kelley
RE: Vagus Nerve Stimulation Therapy
Submitted by johnsusmaras on Sat, 2005-01-29 - 15:20
HI ROD, MY SON HAD THE VNS IMPLANTED ABOUT 16 MONTHS AGO. HE'S HAD
GRAND MAL SEIZURES SINCE AGE 15 . THEY WOULD OCCUR A FEW TIMES A
MONTH IN THE BEGINNING. HE WAS EVENTUALLY PUT ON TWO MEDS TO HELP
END THE SEIZURES. HE WOULD THEN HAVE ONE EVERY FEW MONTHS WITH
NO OBVIOUS PATTERN. WE TRIED VARIOUS TESTS TO FIND THE SOURCE OF
THE SEIZURES WITH NO SUCCESS. OUR DOC RECOMMENDED THE VNS AS A WAY
TO LIMIT MEDICATIONS WITH THE HOPE OF NO MEDS. HE REMAINS ON TWO MEDS
NOW AND WE'RE TRYING A THIRD NOW ,ZONEGRAN, TO REPLACE ONE OF THE
OTHERS. I'VE LEARNED THAT EPILEPSY IS A DARK CLOUD FLOATING ABOVE US
AND IT AFFECTS EVERYONE IN UNIQUE WAYS. THE VNS IMPLANT SURGERY WENT
VERY WELL AND HAS CAUSED NO PROBLEMS. IT HAS BEEN TURNED UP ON FOUR
OCASSIONS. MY SON HAS USED THE WRIST MAGNET JUST A FEW TIMES BECAUSE
HE IS UNABLE TO SENSE A SEIZURE COMING ON. I KNOW THAT MANY AT THIS
SITE WAGE DAILY BATTLES TO CONTROL SEIZURES AND LIVE NORMAL LIVES.
IT'S HARD TO UNDERSTAND MY SON'S BECAUSE OF HOW RARELY THEY DO
OCCUR. ANYWAY, THE VNS JUST TICKLES HIS THROAT AND HAS NO NOTICEABLE
AFFECT ON HIS SPEECH. DURING A RECENT PE CLASS HE SAID HE HAD A SEVERE
LOSS OF BREATH WHILE RUNNING SPRINTS. SINCE THIS NEVER HAPPENED
BEFORE THE DOC SAID THE VNS MAY HAVE CAUSED THE PROBLEM SINCE IT IS
TURNED UP HIGHER NOW. WE' WATCH THAT. BEST OF LUCK.
HI ROD, MY SON HAD THE VNS IMPLANTED ABOUT 16 MONTHS AGO. HE'S HAD
GRAND MAL SEIZURES SINCE AGE 15 . THEY WOULD OCCUR A FEW TIMES A
MONTH IN THE BEGINNING. HE WAS EVENTUALLY PUT ON TWO MEDS TO HELP
END THE SEIZURES. HE WOULD THEN HAVE ONE EVERY FEW MONTHS WITH
NO OBVIOUS PATTERN. WE TRIED VARIOUS TESTS TO FIND THE SOURCE OF
THE SEIZURES WITH NO SUCCESS. OUR DOC RECOMMENDED THE VNS AS A WAY
TO LIMIT MEDICATIONS WITH THE HOPE OF NO MEDS. HE REMAINS ON TWO MEDS
NOW AND WE'RE TRYING A THIRD NOW ,ZONEGRAN, TO REPLACE ONE OF THE
OTHERS. I'VE LEARNED THAT EPILEPSY IS A DARK CLOUD FLOATING ABOVE US
AND IT AFFECTS EVERYONE IN UNIQUE WAYS. THE VNS IMPLANT SURGERY WENT
VERY WELL AND HAS CAUSED NO PROBLEMS. IT HAS BEEN TURNED UP ON FOUR
OCASSIONS. MY SON HAS USED THE WRIST MAGNET JUST A FEW TIMES BECAUSE
HE IS UNABLE TO SENSE A SEIZURE COMING ON. I KNOW THAT MANY AT THIS
SITE WAGE DAILY BATTLES TO CONTROL SEIZURES AND LIVE NORMAL LIVES.
IT'S HARD TO UNDERSTAND MY SON'S BECAUSE OF HOW RARELY THEY DO
OCCUR. ANYWAY, THE VNS JUST TICKLES HIS THROAT AND HAS NO NOTICEABLE
AFFECT ON HIS SPEECH. DURING A RECENT PE CLASS HE SAID HE HAD A SEVERE
LOSS OF BREATH WHILE RUNNING SPRINTS. SINCE THIS NEVER HAPPENED
BEFORE THE DOC SAID THE VNS MAY HAVE CAUSED THE PROBLEM SINCE IT IS
TURNED UP HIGHER NOW. WE' WATCH THAT. BEST OF LUCK.