Poll
Question: Have your seizures and/or Depression gotton better or worse since the implant?
Yes, got better - 15 (53.6%)
No, got  worse - 6 (21.4%)
Not Sure - 1 (3.6%)
To soon to tell - 3 (10.7%)
No Longer Activated - 3 (10.7%)
Decided NOT to Get Device - 0 (0%)
Total Voters: 1

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Author Topic: Has VNS Helped You  (Read 14162 times)
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Rocking4Epilepsy
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« on: February 07, 2007, 05:46:23 AM »

Lets share how the VNS has effect us?

Please share the pro's and the con's including side effects, how long you were sore after the surgery and anything you would like to share.

Would you do it again if you knew THEN what you know NOW?

If your VNS is no longer activated please share with us WHY?

Thanks
« Last Edit: February 07, 2007, 05:50:05 AM by Rocking4Epilepsy » Logged
Birdbomb
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« Reply #1 on: February 07, 2007, 05:52:26 AM »

My side effects were terrible.  Even after the parameter settings were set to the possible lowest settings. :Icky:  
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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!
labrat
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« Reply #2 on: February 09, 2007, 04:57:22 AM »

I realize how fortunate I am to have had such good come from the VNS, despite my EOS experience. I like to hang around this board because of friendships, sharing to give hope and advice. I wish everyone could have a great experience themselves; that part makes me sad.



Labrat    :im_033:  
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Birdbomb
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« Reply #3 on: February 09, 2007, 05:35:12 AM »

:bigarmhug:  
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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!
RGR
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« Reply #4 on: February 18, 2007, 08:27:57 AM »

I have only had VNS for 4 months but am doing much better than I was. I was having 2 complex partial seizures a week and am now having them about 3 weeks apart. I've been told that I am much more alert and less tired looking. My mood seems to be better also.  I've been able to use the magnet during an aura (warning) to stop the seizures. I think the break through seizures I have had is because I didn't use the magnet quick enough. It's wonderful to have a feeling of control over the seizures. ~RG
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zapgirl
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« Reply #5 on: March 14, 2007, 01:20:22 AM »

I have had VNS for 5 months and they have been the best months I
have had in years.  :Great!:   My TRD has started to lift and I have
hope and even look forward to the future.  It has saved my life so far. : party1 :  
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misfireing
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always remember you r not alone with seizures k :)


« Reply #6 on: June 03, 2007, 03:50:26 PM »

I got mine in feb 2006 for sezuries and i ahve been free of them for 7 months and man my depression that came with my sezuies is way better now and i am doing gret too i finally got my licsense to drive and its great to be able to drive and not always walking or bussing every were or depending on others to get some were and my daughter is so happy to see her momo doing so good she ahs never seen me sezuire free since i never have ive been having them since a child it feel great.
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Your not alone so don't be scared to ask questions there will ne someone who can give u good advice or recomandations an can relate to u more then anyone, your not alone so do feel alone.
momofky
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« Reply #7 on: July 23, 2007, 12:45:51 AM »

kyle has only had the implant in for a little over a month,but the turn around is remarkable!! he's doing great! so far so good...  
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kyle 15 yr old son vns~6-07 removed~3-07

God only gives us as much as we can handle
Birdbomb
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« Reply #8 on: July 23, 2007, 03:26:33 AM »

: g : The results of this poll is beginning to take an interesting turn.
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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!
Andrew
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« Reply #9 on: July 23, 2007, 08:27:47 PM »

Mine have got worse, but I suspect that was due to the body experiencing the shock of the operation, rather than the actual VNS itself.
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labrat
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« Reply #10 on: September 13, 2007, 04:35:17 AM »

I'm at 23 months and still doing great!


 :im_033: Labrat  :im_033:  
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gel61820
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« Reply #11 on: September 15, 2007, 06:52:06 AM »

I only had mine activated on Aug 13 of this year, so as of yet I cannot tell any difference.  Of course I was hoping for immediate changes, but I am a realist and do know that it can take quite a few adjustments to find the right setting.  So my response was "too soon to tell".

 :im_033:
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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.
labrat
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« Reply #12 on: September 16, 2007, 05:06:45 AM »

It takes time. Mine took 15 months to totally get me stable with no Bi-Polar swings and depression.


Labrat    :im_033:  :im_033:  
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Patrick
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« Reply #13 on: September 27, 2007, 10:12:31 AM »

My implant was installed twenty-one months ago and it has proven to be a life saver from my TRD.
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labrat
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« Reply #14 on: September 27, 2007, 10:25:30 AM »

Patrick, I have had mine 2 years on October 9th. It has also been a life saver for me. I got mine for TRD which had been going on 11 years. :rolleyes:  
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Patrick
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« Reply #15 on: September 28, 2007, 09:40:20 AM »

I'm glad that you are doing well.   It was a costly procedure for me but in the end it was worth it. No one should have to live with TRD. If it was up to my insurance company I'd be dead by now. I took out a loan for twenty-five thousand dollars to pay for the implant. My insurance company wrote to me that there was no medical efficacy in this operation. I hope that the people who made this decision are given the same amount of compassion when they are suffering.
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labrat
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« Reply #16 on: September 28, 2007, 12:32:32 PM »

Amen brother! I wouldn't wish that kind of hell for anyone, but to the people that deny coverage of this device, well maybe they need a little adjustment in attitude. The hospital I got my VNS at wrote it off as a loss.

Depression can happen to anyone at anytime. What people don't understand is that depression is not like when a family member dies, it is FAR worse! Of course you know that.
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Patrick
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« Reply #17 on: September 29, 2007, 09:45:42 AM »

I agree with you totally.
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gel61820
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« Reply #18 on: September 29, 2007, 01:29:47 PM »

Congratulations on your success, Patrick!  It is terrible that when something is available to help that the insurance company had to say it was not efficient... guess you proved them wrong, eh?

 :im_033:
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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.
Patrick
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« Reply #19 on: September 29, 2007, 09:50:44 PM »

Thanks Gel, I found out a long time ago that medical insurance companies run there affairs just like a big business. There goal is to achieve the highest profit. Doing the right thing is not part of there vocabulary.
 
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gel61820
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« Reply #20 on: October 04, 2007, 12:12:35 PM »

You are very welcome, Patrick.  Here is something that I thought you would appreciate considering what we are discussing:

CREATION

In the beginning, God created the Heavens and the Earth and populated the Earth with broccoli, cauliflower and spinach, green and yellow and red vegetables of all kinds, so Man and Woman would live long and healthy lives.

Then using God's great gifts, Satan created Ben and Jerry's Ice Cream and Krispy Creme Donuts. And Satan said, "You want chocolate with that?" And Man said, "Yes!" and Woman said, "and as long as you're at it, add some sprinkles." And they gained 10 pounds, And Satan smiled.

And God created the healthful yogurt that Woman might keep the figure that Man found so fair.

And Satan brought forth white flour from the wheat, and sugar from the cane and combined them. And Woman went from size 6 to size 14.

So God said, "Try my fresh green salad."

And Satan presented Thousand-Island Dressing, buttery croutons and garlic toast on the side. And Man and Woman unfastened their belts following the repast.

God then said, "I have sent you heart- healthy vegetables and olive oil in which to cook them."

And Satan brought forth deep fried fish and chicken-fried steak so big it needed its own platter And Man gained more weight and his cholesterol went through the roof.

God then created a light, fluffy white cake, named it "Angel Food Cake," and said, "It is good."

Satan then created chocolate cake and named it "Devil's Food."

God then brought forth running shoes so that His children might lose those extra pounds.

And Satan gave cable TV with a remote control so Man would not have to toil changing the channels. And Man and Woman laughed and cried before the flickering blue light and gained pounds.

Then God brought forth the potato, naturally low in fat and brimming with nutrition.

And Satan peeled off the healthful skin and sliced the starchy center in to chips and deep-fried them. And Man gained pounds.

God then gave lean beef so that Man might consume fewer calories and still satisfy his appetite.

And Satan created McDonald's and its 99-cent double cheeseburger. Then said, "You want fries with that?" And Man replied, "Yes! And super size them!" And Satan said, "It is good." And Man went into cardiac arrest.

God sighed and created quadruple bypass surgery.

Then Satan created HMOs  

 :im_033:


 
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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.
gel61820
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« Reply #21 on: October 04, 2007, 12:33:31 PM »

:doh:

Oops, just read "Daily Humor" and saw Birdbomb posted Creation there.  I had it in my emails from a friend and thought it was appropriate considering the topic.

 :im_033:
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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.
kwgreulich
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« Reply #22 on: October 23, 2007, 06:02:59 AM »

I had my VNS put in July 15, 2006. I was averaging about 100 seizures per month and often 3 to 4 partial complex or grand mals in a day. I had previously had 2 brain surgeries related to spinal memingitis and hydro-encephylitis as well as one removing dead brain tissue in the left temporal lobe caused by lack of Oxygen during seizures.

Since the VNS was installed my seizure frequency is down to about 10 per month. It is not perfect, but definitely an improvement. I am still taking 3000 mg per day of Depakote and 1000 mg per day of Primidone. My dosage has actually been increased since the surgery.
« Last Edit: October 23, 2007, 06:05:44 AM by kwgreulich » Logged

KW Greulich
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