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Birdbomb
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« on: March 16, 2004, 11:16:24 AM »

:Welcome:
Thank you for coming to our VNS Message Board.  Feel free to post your comments here, and please follow the posting guidelines.[/size]


 :Please Note: Guests may now post to topics and forums, however, the post must be reviewed by Admin before being allowed to be visible.  Please be aware it may take up to 48 hours for approval on any Guest Post.
« Last Edit: June 02, 2006, 09:06:49 AM by birdbomb » Logged

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
mika
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« Reply #1 on: April 12, 2004, 04:03:34 PM »

Good site.  I have learned a lot from here.  :)  
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Frieda J
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« Reply #2 on: April 15, 2006, 06:44:51 AM »

This is a very informative site.  My adult son was told by his doctor he should consider this  VNS thing.  I am sending him the link.  Thank you for your information.

Frieda
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Bonnie
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« Reply #3 on: November 11, 2007, 05:15:33 AM »

Hello:
I was referred to this link from another VNS link.  I did write a post today, and I don't see it.  I guess it will appear later after it is reviewed?  I thought it was destroyed.  I am unregistered right now.  My post was about after VNS surgery; the numbness etc.  I had a VNS put in on Oct. 12, of this year.  I hope to see soon.
Sincerely,
Bonnie
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Birdbomb
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« Reply #4 on: November 11, 2007, 04:07:43 PM »


Due to trolls, spammers, and individuals with nothing more to do than reek destruction on message boards, all posts with-in the guest forums are moderated for content. Don't want any flashing images, pOrN, or otherwise offensive crap being posted. Strictly for security reasons.

Bonnie, you need to reregister, please.  Your regestration has not shown up in the que, not sure why that has happened.   But every once in a while the server "hiccups" and settings get altered.  Your request could have happen in mid "hic"!
« Last Edit: November 11, 2007, 04:12:59 PM by Birdbomb » Logged

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
GUEST-Bonnie
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« Reply #5 on: November 18, 2007, 04:50:53 AM »

Dear Birdbomb,
I did register today; November 18.  I hope you got it.  There was some confusion because it looked like I had to (register) through Yahoo first, and I didn't I discovered.  That is why I didn't register sooner.  I got around that mess, and found a direct way to your website.
Sincerely,
Bonnie :FYI:  
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GUEST-JEAN
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« Reply #6 on: April 15, 2008, 01:58:35 PM »

Hello:

This is an informative site!
I would like some advice from the members.
I'm an advocate for a 26 yr. old male with TBI and gran mal seizures.  He takes lots of meds and still has 3-4 seizures per month.  Now the doc is considering a VNS.  My friend has physical disabilities from the TBI and has trouble swallowing and speaking.  He also does not express pain, so I'm not sure if he would let us know if the VNS was giving him problems.
I'm afraid to have another surgery for him as he just received a baclafin (sp)  : g : pump in Sept.
Do you have any advice and resources for getting more info?

 :Thanx:  
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Bernard
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« Reply #7 on: April 16, 2008, 05:08:45 AM »

Hi Jean, I don't know how severe his condition is, but if he is a veteran, he might be able to take advantage of this offer?
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What do you know about neurofeedback?
Check out this chart of alternative epilepsy treatments.
Birdbomb
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« Reply #8 on: April 16, 2008, 05:28:43 AM »

Thank you!

Download the  Physician and Patient Manuals

I would be very careful with the swallowing issues.  VNS can acurbate that.
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
korisue
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« Reply #9 on: May 26, 2008, 08:46:01 AM »

I learned of you through a link in the epilepsy forum - found out quite a bit must say.  I have registered for your site also as i would like to track a lot of this, but especially the pediatric VNS messages.  My daughter, same as in epilepsy forum, Jessica will be 4 next month and she had her VNS placed in Dec of 07.  She not only had swallowing problems but all of the above.  She doesn't eat solids, walk, talk, communicate other than through pitch of her sounds etc etc.  She has many many therapists and has had since she was a little over a year.  Her medical and seizure history are full to say the least.  As stated in epilepsy forums, she has tried way to many kinds of horrible meds, the shots, etc etc.  The VNS was mentioned to us by her new neuro and she has done wonderful with it.  She is now 45 days seizure free, eating more, more alert, and slowly learning walking etc.

I guess i am a little blown away by all the negative with the VNS.  Honestly if i had seen this site and some others prior to our decision for Jess i may not have done it as there is so much negative with it.  I am glad i didn't make that choice though - she is so much better.

I am going to have her growth hormones checked at her next blood draw - I am very thankful that information and all this is here for all of us with any connection to VNS and i will be reading daily!  I hope and pray Jess never has all the problems ive seen associated with the VNS, but i guess now i know what to watch for huh!   Thank you.  
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MissJennie
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« Reply #10 on: May 27, 2008, 12:24:25 AM »

My heart breaks when I read what the little children and their parents are going through on this site.

I have TRD, and feel ashame of complaining, when I read other's stories.

I just wanted to say, that I am upset about my VNS because I wasn't told the whole truth about the side effects, and I wasn't told about the problem with removing the device. (not being able to remove it ALL)

If I had been told everything, then I could have made a better choice about having the implant or not.

It has not helped me at all. I have had nothing but problems with it.

BUT!! I am soooooooooooo glad it has worked for other's!!!!!!!!!

I am so happy your daughter is doing better, that is great news to hear.

Until I found this site, I had no one that understood what I was going through.
I thought I was "JUST CRAZY". (the doctor's made me feel that way and the Hospital ER personnel did too.)

I REALLY HOPE YOUR DAUGHTER CONTINUES TO IMPROVE!
 :bigarmhug:  
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Implanted April 2006 for TRD
Explant July 23, 2008, Coil left in Sad
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« Reply #11 on: May 27, 2008, 08:56:50 AM »

Hi korisue,

I'm glad you found this site.  I understand that it was unsettling to see all the challenges people have had with VNS.  It's so good to hear your success story.  You make a great point, that by reading the "bad stuff", if anything happens with your daughter, you will be familiar with it.

I've enjoyed this site because it keeps me informed and up-to-date on what's happening with others who have VNS.  For those of us who have had challenges with VNS/Cyberonics, it's good to have the ongoing input of people who have good responses.

Keep us posted!
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The most successful people are those who are good at plan B.
~James Yorke~
Dispatch
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« Reply #12 on: May 27, 2008, 12:51:03 PM »

Quote
Hello:

This is an informative site!
I would like some advice from the members.
I'm an advocate for a 26 yr. old male with TBI and gran mal seizures.  He takes lots of meds and still has 3-4 seizures per month.  Now the doc is considering a VNS.  My friend has physical disabilities from the TBI and has trouble swallowing and speaking.  He also does not express pain, so I'm not sure if he would let us know if the VNS was giving him problems.
I'm afraid to have another surgery for him as he just received a baclafin (sp)  : g : pump in Sept.
Do you have any advice and resources for getting more info?

 :Thanx:
HI Jean!

It is a bit late for me to respond since you posted April 15.  Sorry 'bout that.

In the Physicians/Patients Manuals, it clearly states a person with a brain injury is not a candidate for the device.  You can access these manuals here on this site and look in the "Warning" section.  It also states on the FDA site persons with a brain injury were excluded from testing for the device.  Also look at University of Michigan/deprssion site, where it states this information as well.  I did not know that information until a bit over a year after I was implanted-I have a traumatic brain injury and was implanted for depression.  VNS created greater issues with my brain injury, and I have had a complete removal.  Patients are not given the manual until after implant.  Please research VNS further for the person you advocate, and talk with the Doctor who is referring implant about the information I have just provided you.

Although late, I hope this information has been helpful for you.  Please keep us updated.

Dispatch
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
Dispatch
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« Reply #13 on: December 02, 2010, 12:13:21 AM »

 Grin

ATTTENTION ALL MEMBERS AND GUESTS:

It has come to Administrations attention AGAIN that posts from this message board are being copied into other forums by a person who is not authorized to do so.  All Members strictly adhere to Forum Rules and Regs, and Guests are of no exclusion to the rule.  PLEASE refresh yourself on the forum rules by clicking below.

http://www.vnsmessageboard.com/index.php/topic,51.0.html

Thanks to all our Members and Guests who do abide by the rules set forth by the Administrator of this board.  The rules are here for a reason, one of which is to protect the privacy of our Members and Guests, and another is to avoid personal attacks and humiliation of our Members and Guests for opinions that differ from one person. 

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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
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