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  #21  
Old 03-20-2012, 07:23 PM
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I've had the vns for a year now. At the beginning it was helping alot but lately its lessening. Also I just had the stimulation raised at the neurologist yesterday & today its giving me chest pains. Anyone had this happen?
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  #22  
Old 03-20-2012, 08:22 PM
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After having these problems this long, hearing the negavtive things about meds and VNS not working for most, why should I let my douche bag neurologist talk me in to a VNS or signing a waiver for brain surgery? I am scared, really, what should I do, I cry almost every night! Thanks for all the help and support here on CWE!
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  #23  
Old 03-21-2012, 06:43 AM
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Originally Posted by Screamy View Post:
... I am scared, really, what should I do, I cry almost every night! ...
I posted a long list of suggestions in the proactive prescription thread (see link in signature).
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  #24  
Old 03-21-2012, 09:46 AM
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Originally Posted by Screamy View Post:
After having these problems this long, hearing the negavtive things about meds and VNS not working for most, why should I let my douche bag neurologist talk me in to a VNS or signing a waiver for brain surgery? I am scared, really, what should I do, I cry almost every night!
Maybe you should see an epileptologist instead. I am one of the ones the VNS HAS worked for, after trying numerous drugs and a Left Temporal Lobectomy. What works for one, doesn't necessarily work for another. I've had a few breathing problems with the VNS, but that is with it being at it's highest setting and sometimes I do wheeze. For me, all this beats the serious type of tonic clonic seizures I was having that nearly killed me. At least I can stop them now.
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  #25  
Old 07-25-2012, 05:35 PM
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i just saw a new neurologist for 1 st time and can barely understand him--- but he wants me to try vns ---his friend does it so------ 1st visit and he wants me to get surgery?
and from what i read about it i am am still not sure about it
if anyone thinks they can help me i am all ears i will keep looking into it then decide
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  #26  
Old 07-26-2012, 10:54 AM
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Originally Posted by lottalead View Post:
i just saw a new neurologist for 1 st time and can barely understand him--- but he wants me to try vns ---his friend does it so------ 1st visit and he wants me to get surgery?
...
Bolded parts are red flags IMO. I'm not familiar with your situation, but I would expect that there are other options open to you with less drastic potential consequences that you might want to explore first.
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  #27  
Old 07-26-2012, 04:39 PM
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I don't need a VNS because my seizures have been under control since I had surgery last year. I don't know a real lot about VNS but I often read posts about the VNS. I'm curious what the process is to get a VNS so have a couple out of questions (they probably are really silly questions lol).

- Do the neurologists/ epitiologist usually try a person on a certain number of meds before they suggest VNS?
- Does a person have to go through a series of tests before they can have the VNS?
- Is VNS usually suggested as a last resort?
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  #28  
Old 07-26-2012, 06:43 PM
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thanks benard i am agreeing with you and already thinking about a new neurologist
mostly i want one i can understand and will listen to me this seems like he knew what he was gonna say before i got there
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  #29  
Old 07-26-2012, 07:11 PM
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Good VNS information can be found on CWE member BirdBomb's site: http://www.vnsmessageboard.com/
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  #30  
Old 07-26-2012, 07:39 PM
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Originally Posted by CQ:) View Post:

- Do the neurologists/ epitiologist usually try a person on a certain number of meds before they suggest VNS?
- Does a person have to go through a series of tests before they can have the VNS?
- Is VNS usually suggested as a last resort?
For me, the VNS was used as a last resort for seizure control, after trying 11 meds and brain surgery.

Originally Posted by lottalead; :
i just saw a new neurologist for 1 st time and can barely understand him--- but he wants me to try vns ---his friend does it so------ 1st visit and he wants me to get surgery?
and from what i read about it i am am still not sure about it
if anyone thinks they can help me i am all ears i will keep looking into it then decide
Do you have refractory epilepsy? Have you tried meds that don't work? IMO, that neurologist is knife happy. VNS surgery should be reserved as a last resort.

For info on the VNS go to this website:
http://us.cyberonics.com/en/vns-ther...ctory-epilepsy

Quote :

VNS Therapy is a non-drug treatment option that could help provide a new sense of control and independence to people living with seizure disorders.

VNS Therapy 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 not controlled by medication or who experience intolerable side effects. More than 60,000 people worldwide have been treated with VNS Therapy for epilepsy.
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  #31  
Old 08-09-2012, 05:30 PM
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Originally Posted by chinchillachic18 View Post:
Anybody have one? How does it work and has it worked for you?
I had a VNS installed in 2007 and at the time we did some settings with it to determine the best setting that would work for my benefit. There were a few things that needed to be worked out due to the type of activity taking place with my type of seizure activity and the location of my seizures.

That can only be determined by your neurosurgeon and your neurologist after the mapping has been completed.

Long story short.. we ended up turning my VNS down to the lowest setting possible which it works just fine. Reason: My seizures take place in the core of my brain and I needed to have what is called the DBS for Epilepsy done and the surgeon placed one lead in the area causing all the chaos. Everything is going marvelous now.

There are many I speak with who do quite well with the VNS because of their type of seizures and the location of their seizures. In my case it is different because of the location within my brain. I needed an extra boost. We hope to one day eliminate the usage of the VNS and use nothing but the DBS for E because of it's capabilities; settings; and code. For now, everything is satisfactory so why make changes if it works perfect?

I wish you the best of luck should you choose to go with the VNS. I would continue to ask a lot of questions to your neurologist and to whomever is doing the surgery. I believe this is an item that can help someone who has seizures and receives warning (aura) before the seizure appears. The VNS works best with those patients who are warned because it uses a magnet to swipe the VNS piece inside the chest and stop the seizure before it takes place. Hope that helps your research!

Warm regards,
Sue

Temporal Resection-1995; VNS-2007; DBS for Epilepsy-2011
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  #32  
Old 09-27-2012, 12:39 AM
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Originally Posted by Birdbomb View Post:
When the battery reaches the End of Service (EOS) the unit must be replaced. The time can vary depending on the amount and frequency of stimulation. Also some of the 102 models had problems of sudden EOS without warning before it's expected time.

One of my Mods must have her unit replaced about every 18 months. But most go 2 to 5 years before replacement is needed.
I had mine replaced after four years usage. That's a pretty good time limit if you ask me. Heck, I had the first one installed in 2007 and the second one, a brand new and smaller model, was installed Oct 2011.
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