NeuroTalk Support Groups

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Epilepsy (https://www.neurotalk.org/epilepsy/)

- - Vns (https://www.neurotalk.org/epilepsy/222-vns.html)

Rocking4Epilepsy

08-28-2006 10:30 AM

Vns

Do any of you have the VNS?

What is your thoughts on this?
Is it helping with sz control?

preciousmoments

08-29-2006 07:15 AM

why are you asking?

I think it's a wonderous device and has helped many people.

Rocking4Epilepsy

08-29-2006 08:01 AM

Quote:

Originally Posted by preciousmoments (Post 1633)

why are you asking?

I think it's a wonderous device and has helped many people.

I am curious how this device is helping people.
I have heard from many people the horror stories and wondered if there was any good side to this.

preciousmoments

08-29-2006 08:30 AM

from our experience...it's usually people who dont educate themselves BEFORE being implanted, who have the most problems. the ones who chose to try one drug before opting for the surgery.

Rocking4Epilepsy

08-29-2006 09:17 AM

Quote:

Originally Posted by preciousmoments (Post 1644)

from our experience...it's usually people who dont educate themselves BEFORE being implanted, who have the most problems. the ones who chose to try one drug before opting for the surgery.

You say in your experience?
Can I ask what that is?

Do you have the VNS or a loved one?
Is this an adult or a child?

Is it helping sz control?
How many meds did this person try before getting implant?

preciousmoments

08-29-2006 10:32 AM

my two children have it. My son would tell you in a heartbeat, he'd do it again...My DD doesnt verbalise too well. My son tried 8 different meds, my DD 13...

Birdbomb

09-01-2006 11:49 AM

Quote:

Do any of you have the VNS?

What is your thoughts on this?
Is it helping with sz control?

My VNS was turned off December 2004. Neuro pathway were created causeing this device to send "messages" down my left arm into my hand and fingers everytime it ramped up. This was quite painful and caused my arm to become numb and useless for the duration of the cycle.

I did not see any signifigant seizure reduction however it did shorten the post-ictal period considerably. Complex particals left me post-ictal for 3 days, but this time was reduced to less than a few hours.

There are several members on my site,http://www.vnsmessageboard.com that have excellent seizure control as well as others who experiance nothing but problems.

Rocking4Epilepsy

09-01-2006 08:24 PM

Quote:

Originally Posted by preciousmoments (Post 1662)

my two children have it. My son would tell you in a heartbeat, he'd do it again...My DD doesnt verbalise too well. My son tried 8 different meds, my DD 13...

In your opinion is it helping your daugter? Has sz control gotton better?

Are you by chance a member on the vnsmessageboard? I bet you could get great support from others

I hate seeing kids have to deal with this

Birdbomb
Thanks for sharing.
I think I have read every post on your site and got tons of great info and advice from what others experience. Great site you have. Keep up the good work

Birdbomb

09-01-2006 08:30 PM

Thank you Jen,

We have over 600 members from all over the globe and even the CEO of Cyberonics pops in from time to time!

There have been several news articles written about my members and we are currently waiting for the lastest NYTimes article to come to print. We are getting a FULL page!

There are success and horror stories in dealing with VNS. Each is an individual adventure.

traciboop

09-29-2006 04:51 PM

Yes Rocking4Epilepsy I To Have the VNS

Quote:

Originally Posted by Rocking4Epilepsy (Post 1394)

Do any of you have the VNS?

What is your thoughts on this?
Is it helping with sz control?

My VNS DID not work out as well has I had Planed I am sorry to say.I have had my VNS now for three years and no luck My voice still goes in and out every time it goes off and I still have sz.I am now looking at Brain Surgery for my sz control if my new pill dose not do the trick for me .But I wish well to all the others that chose the VNS

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