Home Menu

Site Navigation



Epilepsy For support and discussion about Epilepsy and Seizure Disorders.


advertisement
NeuroTalk Support Groups > > >

Vns

Reply
Page 1 of 2 1 2
 
Thread Tools Display Modes
Old 08-28-2006, 10:30 AM #1
Rocking4Epilepsy's Avatar
Rocking4Epilepsy Rocking4Epilepsy is offline
----
  
Join Date: Aug 2006
Location: Davenport, Iowa
Posts: 468
15 yr Member
Rocking4Epilepsy Rocking4Epilepsy is offline
----
Rocking4Epilepsy's Avatar
 
Join Date: Aug 2006
Location: Davenport, Iowa
Posts: 468
15 yr Member
Default Vns
Do any of you have the VNS?

What is your thoughts on this?
Is it helping with sz control?
Rocking4Epilepsy is offline   Reply With QuoteReply With Quote

advertisement
Old 08-29-2006, 07:15 AM #2
preciousmoments preciousmoments is offline
New Member
  
Join Date: Aug 2006
Posts: 5
15 yr Member
preciousmoments preciousmoments is offline
New Member
 
Join Date: Aug 2006
Posts: 5
15 yr Member
Default
why are you asking?

I think it's a wonderous device and has helped many people.
preciousmoments is offline   Reply With QuoteReply With Quote
Old 08-29-2006, 08:01 AM #3
Rocking4Epilepsy's Avatar
Rocking4Epilepsy Rocking4Epilepsy is offline
----
  
Join Date: Aug 2006
Location: Davenport, Iowa
Posts: 468
15 yr Member
Rocking4Epilepsy Rocking4Epilepsy is offline
----
Rocking4Epilepsy's Avatar
 
Join Date: Aug 2006
Location: Davenport, Iowa
Posts: 468
15 yr Member
Default
Quote:
Originally Posted by preciousmoments View Post
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.
Rocking4Epilepsy is offline   Reply With QuoteReply With Quote
Old 08-29-2006, 08:30 AM #4
preciousmoments preciousmoments is offline
New Member
  
Join Date: Aug 2006
Posts: 5
15 yr Member
preciousmoments preciousmoments is offline
New Member
 
Join Date: Aug 2006
Posts: 5
15 yr Member
Default
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.
preciousmoments is offline   Reply With QuoteReply With Quote
Old 08-29-2006, 09:17 AM #5
Rocking4Epilepsy's Avatar
Rocking4Epilepsy Rocking4Epilepsy is offline
----
  
Join Date: Aug 2006
Location: Davenport, Iowa
Posts: 468
15 yr Member
Rocking4Epilepsy Rocking4Epilepsy is offline
----
Rocking4Epilepsy's Avatar
 
Join Date: Aug 2006
Location: Davenport, Iowa
Posts: 468
15 yr Member
Default
Quote:
Originally Posted by preciousmoments View Post
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?
Rocking4Epilepsy is offline   Reply With QuoteReply With Quote
Old 08-29-2006, 10:32 AM #6
preciousmoments preciousmoments is offline
New Member
  
Join Date: Aug 2006
Posts: 5
15 yr Member
preciousmoments preciousmoments is offline
New Member
 
Join Date: Aug 2006
Posts: 5
15 yr Member
Default
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...
preciousmoments is offline   Reply With QuoteReply With Quote
Old 09-01-2006, 11:49 AM #7
Birdbomb's Avatar
Birdbomb Birdbomb is offline
Junior Member
  
Join Date: Aug 2006
Location: Las Vegas, Baby!
Posts: 67
15 yr Member
Birdbomb Birdbomb is offline
Junior Member
Birdbomb's Avatar
 
Join Date: Aug 2006
Location: Las Vegas, Baby!
Posts: 67
15 yr Member
Default
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.
__________________

.


"If you are going through h e l l, keep going."
(Sir Winston Churchill, 1874-1965)

C'est la vie!

Work like you don't need money, Love like you've never been hurt,
And dance like no one's watching.
Birdbomb is offline   Reply With QuoteReply With Quote
Old 09-01-2006, 08:24 PM #8
Rocking4Epilepsy's Avatar
Rocking4Epilepsy Rocking4Epilepsy is offline
----
  
Join Date: Aug 2006
Location: Davenport, Iowa
Posts: 468
15 yr Member
Rocking4Epilepsy Rocking4Epilepsy is offline
----
Rocking4Epilepsy's Avatar
 
Join Date: Aug 2006
Location: Davenport, Iowa
Posts: 468
15 yr Member
Default
Quote:
Originally Posted by preciousmoments View Post
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
Rocking4Epilepsy is offline   Reply With QuoteReply With Quote
Old 09-01-2006, 08:30 PM #9
Birdbomb's Avatar
Birdbomb Birdbomb is offline
Junior Member
  
Join Date: Aug 2006
Location: Las Vegas, Baby!
Posts: 67
15 yr Member
Birdbomb Birdbomb is offline
Junior Member
Birdbomb's Avatar
 
Join Date: Aug 2006
Location: Las Vegas, Baby!
Posts: 67
15 yr Member
Default
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.
__________________

.


"If you are going through h e l l, keep going."
(Sir Winston Churchill, 1874-1965)

C'est la vie!

Work like you don't need money, Love like you've never been hurt,
And dance like no one's watching.
Birdbomb is offline   Reply With QuoteReply With Quote
Old 09-29-2006, 04:51 PM #10
traciboop's Avatar
traciboop traciboop is offline
Member
  
Join Date: Sep 2006
Location: USA
Posts: 439
15 yr Member
traciboop traciboop is offline
Member
traciboop's Avatar
 
Join Date: Sep 2006
Location: USA
Posts: 439
15 yr Member
Unhappy Yes Rocking4Epilepsy I To Have the VNS
Quote:
Originally Posted by Rocking4Epilepsy View Post
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
traciboop is offline   Reply With QuoteReply With Quote
Reply
Page 1 of 2 1 2

« Previous Thread | Next Thread »

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


All times are GMT -5. The time now is 07:26 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

All posts copyright their original authors.

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.

Always consult your doctor before trying anything you read here.

Home