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Author Topic: not sure about a VNS  (Read 13674 times)
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worried
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« on: May 09, 2006, 04:12:08 PM »

I am new hear I signed it says my account is being reviewd.  My seizures will be controled for  a year or so  and then the come back. The dr has tried all the meds they can, now he wants me to have a meg scan and have a vns put in. Im worried there has to be side effects with a vns. Can it not cause brain damage over time? have you all had good things happen with it? I just graduated collage and am about to get married I dont want anything bad to happen.
              The bad thing is im a teacher and just had a seizure in the classroom. Please talk to me
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Birdbomb
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« Reply #1 on: May 20, 2006, 01:46:00 PM »

My apologies as this message was not posted sooner.  InvisionFree had recently upgraded the server and there are a few flaws in the system.  Your post was not visual until today. :huh:

As with medication, VNS also has side effects.  No one can say if you will experiance any adverse effects, or if you do, how severe they may affect you.

You will have to be the judge on whether or not to get the VNS.  Research as much as you can, read the Physician and Patient Manuals.  Found here.  Talk to people with the VNS, both those who have good and bad experiances.  Educate yourself and be aware of all the possibilities.

 :Welcome: Welcome to the board, SarahJane25 .  You have found a great bunch of folks.




 
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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!
Bernard
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« Reply #2 on: May 21, 2006, 01:19:15 AM »

Quote
... side effects with a vns. Can it not cause brain damage over time? have you all had good things happen with it? I just graduated collage and am about to get married I dont want anything bad to happen.
Hi Worried, welcome to the forum.  :Welcome:

Brain damage is not a potential adverse event for the VNS as far as I know.  There is a long list of potential adverse events (side effects), but no one knows how any individual will respond to the VNS prior to actually having it implanted and activated.  It's a bit of a crap shoot as far as whether or not the benefits (if any are realized) will outweigh the negatives (if any are realized).

Congratulations on your graduation and pending nuptials!

BTW, stress (all kinds - good and bad) is often a major seizure trigger and it sounds like with graduation and pending nuptials you have a ton of (good) stress (and possible anxiety) at the moment.  I'm guessing it's possible your recent seizure activity may be related...
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2kids and a dog
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« Reply #3 on: May 21, 2006, 01:28:15 AM »

Quote
The bad thing is im a teacher and just had a seizure in the classroom

This could be an excellent oppurtunity to tell your students about epilepsy.  Depending on their age, you can even give them basic seziure rescue or instruct them to call 911.  

Congradulations on your upcoming wedding and recent graduation.   And  :Welcome:  
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Tincatt
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« Reply #4 on: October 20, 2006, 08:02:10 AM »

I too am apparently awaiting to be approved (since I can't log in.) I had a VNS implanted about 11 months ago. I went from at least 3  grand mal seizures  a week to maybe 1 or 2 every month. Every time I see my neurologist she adjusts the gizmo, (thats my pet name for the VNS) and the seizures seem to continue to lessen.
I would recomend the VNS for anyone who cannot control their seizures through medication alone.
I wish I could log into the regular message board, someone in there wants to know if its ok to get a VNS if one's seizures are caused by a head injury. My seizures are caused by a closed head injury do to a car accident.
 I could go on and on about how much my life has improved and continues to improve due to the VNS implant.  Medication wasn't helping me much at all. The only medication that even helped any seems to be Keppra and that is very expensive. Now not only do I have fewer seizures but they seem to be less severe and i don't seem as drained and tired after i have had a seizure.
Anyway talk it over with your neurologist. Goodluck.
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Birdbomb
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« Reply #5 on: October 20, 2006, 08:23:55 AM »

Tincatt, I don't have your registration in the queue.  Could you please reregister?  I think there may be a server glitch with my forum hosts today.  I have run into some other minor problems as well.
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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!
David
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« Reply #6 on: February 11, 2007, 02:51:59 AM »

David;  Iam not approved to the site yet. I too am at the time in my sz life when a VNS has been offered as an aid to control my sz. Control of my sz by meds has only been of limited help. I'm on Keppra, Gabitril ,and Trileptal. On an increase of Trileptal and a decrease of Gabitril trying to find that magic combination to control sz. I read/hear of sz control but never of stopping seizures, like maybe seizures never really go away. My seizures are possibly from childhood brain injury, age one, now I'm 59. If I go the route of VNS  
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David
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« Reply #7 on: February 11, 2007, 03:02:29 AM »

David; seizures for 20 months on meds, Keppra,Gabitril, and Trileptal. Increase Trileptal and decrease Gabitril to find magic combination to control seizures. Meeting with doc last week she brought up VNS as a real option for me to think about if this shuffle of meds does not help. My seizures are partial and complete, cause is likely from head injury at 1 year old, now 59 years old. Is this VNS really the way to go? Some of those side effects are worse than seizures and you can still have the seizures! Any feed back welcome. Thank You  
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Rocking4Epilepsy
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« Reply #8 on: February 11, 2007, 01:46:47 PM »

Hi David
I want to welcome you to the forum.
You have found a great site for support and advice...

I see your membership has been approved so I hope you find alot to read and get advice you are looking for.

hugs
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RG
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« Reply #9 on: February 18, 2007, 07:12:08 AM »

Hi David,
I'm waiting to be approved too. I suffered a head injury from a motorcycle accident 35 years ago. It took me 2 years of speech and physical therapy to talk and walk again. My seizures started a year later and were well controlled up until 10 years ago. I've gone through Dilantin, Tegretol, Carbatrol, Topomax, Lamictal and am now on Keppra and Trileptal and was still not well controlled. The doctor started suggesting VNS 5 years ago and it took me over 4 years of prayer and research (by reading these blogs and medical journals) before I agreed to have it implanted. I've had it 4 months now and wish I had done it sooner. Though I still have an occasional complex partial seizure, I'm doing much better than I was. My mood is better and I'm told I'm much more alert and no longer look worn out. I believe I was lead to find the right surgeon. I've been told that it's important to find one who is experienced in this surgery because it's important where the wires are placed on the nerve. ~RG
 
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Don
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« Reply #10 on: April 12, 2007, 08:28:37 AM »

I've been through every AED available since 1991 and after the invasive EEG ruled out brain surgery to remove the bad tissues from a car accident which are causing the seizures, I agreed to have the VNS implanted on 1/24/07.  Since the 3rd monthly ramp up, my seizures have dropped significantly.  I cannot wait until I can hopefully reduce the 9 a day AED's thus reducing their negative side affects.  If I can handle taxes, I can handle a scratchy throat now and then!
Best wishes to All!
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Guest
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« Reply #11 on: June 27, 2008, 12:20:44 AM »

My 9 year old, after years of different drugs, that have ravaged her has gone from upto 30 seizures an hour, to almost none....VNS rocks....and the drugs are now being reduced to hopefully none, if your worried, then i worry about u not having it done ..get on with it...
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Birdbomb
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« Reply #12 on: June 28, 2008, 08:16:36 AM »

Quote
My 9 year old, after years of different drugs, that have ravaged her has gone from upto 30 seizures an hour, to almost none....VNS rocks....and the drugs are now being reduced to hopefully none, if your worried, then i worry about u not having it done ..get on with it...

Quote
The VNS Therapy System is indicated for use as an adjunctive therapy in reducing the frequency of seizures in adults and adolescents over 12 years of age with partial onset seizures, which are refractory to antiepileptic medications[/size]

It's wonderful your child has gotten relief with VNS.  Why not register and share your experiance with other hopefuls?

The FDA has NOT approved the VNS to be implanted in anyone UNDER the age of 12.  To do so, is to use the VNS as "off-label" thus removing any and all responsibility from Cyberonics.  Should your child suffer any side effects/damage/ or death from VNS, it will be considered USER ERROR.
« Last Edit: June 28, 2008, 08:18:08 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!
labrat
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« Reply #13 on: June 28, 2008, 12:20:46 PM »

Please register so that you can get full advantage of the message board. Welcome!
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Dispatch
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« Reply #14 on: June 28, 2008, 05:11:20 PM »

To Guest: :Welcome: and I hope you register, and please keep us posted so others can hear about your child's success with VNS.  It is great to hear good things, and I wish your child continued success!

I will be a broken record that a patient with TBI is unapproved for use of VNS per the manuals.  I can't believe doctors and Cyberonics have lead so many people with TBI to be implanted with the device.  Makes me wonder if I'm going to get to hear the USER ERROR story as I was never informed I wasn't a candidate due to TBI.  It makes me frustrated to know there are a lot more people out there than I realized that have actually been told by their physician that they should consider the VNS with a TBI.  In my case, the VNS messed me up and caused greater TBI issues.

Dispatch B)
« Last Edit: June 28, 2008, 05:14:22 PM by Dispatch » Logged

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
shirella
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« Reply #15 on: July 21, 2008, 08:39:47 AM »

My son Chad had the vns implanted 1 week ago.  I am hopeing this is the miracle so that he does not have to have seizures everyday.  He sleeps a great deal at this moment and does not seem to be in any pain.  He is non vocal therefore he cannot say if he is or isn't.  I want to know if everyone got cut on the front of the neck and how long it took before it healed?  Also we get the vns turned on next week should I ask for the lowest setting?
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« Reply #16 on: July 21, 2008, 09:06:22 AM »

If you register, you will be able to see our photo gallery of the surgical incisions for VNS.  there needs to be two seperat incisions.  One for the carotid sheath, this is the access to the vagus nerve and the electrodes are wrapped around the nerve.  The second incision is to implant the generator and to tunnel up to the carotid sheath for the leads.

I am surprised that you are not more informed about it.  The first settings are always low.  The body had to get accustomed to it and also to make sure there is no discomfort.  VNS is not suppose to be painful
.  
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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!
gel61820
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« Reply #17 on: July 21, 2008, 10:49:17 AM »

Hi Shirella,

As Birdbomb said there are photos posted on the site.  You do need to be a member to see them but you will see not just the incisions after the surgery but also the scars after periods of time.

Regarding your question on activation, this is from the manual your son's doctor was given by Cyberonics regarding activation and adjustment:


Quote
Patients should be started on stimulation at a low current setting (0.25
mA), and the current should be increased gradually to allow
accommodation to the stimulation. For patient comfort, the output current
should be increased in 0.25 mA increments until a comfortable tolerance
level is reached. Physicians should appreciate that some patients will
accommodate to stimulation levels over time and should therefore allow
further increases (in 0.25 mA steps) in output current, if needed.

I was personally adjusted every 4-6 weeks once I was activated and once I got to .75 output my doctor had to adjust the pulse width to a lower setting so that I could handle going up to 1.00 output.  By adjusting the pulse width from 500 to 130 I was able to accept the higher output setting.

I personally was not actived for 3-4 weeks to allow the vagus nerve time to heal to avoid unnecessary pain.  Your son will be aware of the activation and will be hoarse, have a tight throat when the stimulator is ON, might have some coughing or swallowing issues at first but most of these side affects to activation usually go away after a few days.  Throat lozenges work wonders!  

Wishing your son a very speedy recovery.
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"Do not go where the path may lead, go instead where there is no path and leave a trail." Ralph Waldo Emerson

VNS implanted July 2007 for Epilepsy.  Activated August 2007.  No success, so VNS was turned off in August 2008 and COMPLETELY removed (including coils) on Nov 25, 2008.
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« Reply #18 on: July 22, 2008, 01:16:14 AM »

:Welcome: Shirella!

Please become a member so you can take full advantage of the board.  I wish your son the greatest success with VNS.

Dispatch B)
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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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