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Resources for VNS Therapy
Mon, 03/24/2008 - 22:46Hi everyone,
We had Dr. Steven Schachter join us this afternoon for a Question and Answer Chat on VNS Therapy. Here are a number of links to information on the site about VNS. I have also included a link to Cyberonics. Hope this helps!
Epi_help
http://my.epilepsy.com/epilepsy/vns
http://my.epilepsy.com/epilepsy/vns_what
http://my.epilepsy.com/epilepsy/vns_data
http://my.epilepsy.com/epilepsy/vns_other
http://my.epilepsy.com/epilepsy/vns_history
http://my.epilepsy.com/101/vns_therapy_101
http://my.epilepsy.com/epilepsy/travel_tips_vns_other_treatment
http://professionals.epilepsy.com/page/vagusnerve.html
http://www.vnstherapy.com/ (this takes you to Cyberonics, the company that makes the device)
Seizures and Teens: When medicines don’t work – Devices and Diet - http://my.epilepsy.com/pdfs/Except_parent_art9.pdf
Comments
Re: Resources for VNS Therapy
Submitted by birdbomb on Tue, 2008-03-25 - 13:57
Bernard speaks the truth. Responsible marketing and truth in advertizing should include ethics, but alas, it does not. Telling the whole story and NOT glossing over the negitive aspects helps people make an INFORMED decision.
If you choose VNS as a form of temporary (and it is nothing more than that, it does not cure) treatment for epilepsy or depression, you should have access to ALL the information, not just the shiney, new, happy poential promises.
Bernard speaks the truth. Responsible marketing and truth in advertizing should include ethics, but alas, it does not. Telling the whole story and NOT glossing over the negitive aspects helps people make an INFORMED decision.
If you choose VNS as a form of temporary (and it is nothing more than that, it does not cure) treatment for epilepsy or depression, you should have access to ALL the information, not just the shiney, new, happy poential promises.
Re: Resources for VNS Therapy
Submitted by banffgirl on Tue, 2008-03-25 - 20:20
yes it is very true they dont tell the whole story, it would be great if the books they give you after, are given to you before. that way it is easier to wiegh the pros and cons. though even after having a meltdown about having it put in, the thing is, when you take so many different meds over so many years and you are still not controled, i decided it was worth the risk. i havent had it long, just 7 weeks and there has been a slight decrease already. i am on a lot of meds which the goal is to cut them way down. the meds can kill you or sudep which i have read extensively on. we are prime canidates for sudep. so yes there are risks, but any time you have even the simplest surgery there are risks, walking across the street, there are risks. i have finally come to terms with my decision thanks to vns board and reading it and talking to other friends who have one and its working well for them.
all we need to do now is get those books in the doctors offices for the people coming behind us!!!!!!!
God Bless,
banffgirl
life is fragile, handle with prayer.
yes it is very true they dont tell the whole story, it would be great if the books they give you after, are given to you before. that way it is easier to wiegh the pros and cons. though even after having a meltdown about having it put in, the thing is, when you take so many different meds over so many years and you are still not controled, i decided it was worth the risk. i havent had it long, just 7 weeks and there has been a slight decrease already. i am on a lot of meds which the goal is to cut them way down. the meds can kill you or sudep which i have read extensively on. we are prime canidates for sudep. so yes there are risks, but any time you have even the simplest surgery there are risks, walking across the street, there are risks. i have finally come to terms with my decision thanks to vns board and reading it and talking to other friends who have one and its working well for them.
all we need to do now is get those books in the doctors offices for the people coming behind us!!!!!!!
God Bless,
banffgirl
life is fragile, handle with prayer.
Re: Resources for VNS Therapy
Submitted by bernardcwe on Tue, 2008-03-25 - 08:02
The /vns_what page sure does paint a rosy picture of the VNS, but does not give a complete picture IMO. A few comments:
The section under "Does it really work?" claims up to 60% efficacy. Cyberonics claims a peak of 43.7% efficacy at 2 years and then a decline in efficacy after that (from their own studies):
The There must be some bad side effects! section completely glosses over the numerous serious risks involved with the device (as listed in the VNS Physician's Manual). Spend a bit of time reading at the VNS Message Board for first hand experiences with the system to get an idea of the real life problems that patients are struggling with when the VNS causes problems. They may not be typical, but they are severe and life threatening in many cases.
The VNS has permanent consequences once implanted. For example, BirdBomb, the admin of the VNS Message Board, cannot get an MRI done on her neck area to check for a non-VNS related problem. She had the VNS turned off and the generator explanted, but they won't remove the coils from the Vagus nerve because it's too dangerous with all the scar tissue from the implant surgery.
There are some other, safer alternatives to the VNS (LGIT, Modified Atkins or Ketogenic diets, Neurobehavioral Therapy, EEG neurofeedback) that have been studied and shown to have a higher efficacy rate than the VNS. They should be presented as an option before the VNS IMO. At least they don't have permanent consequences!
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The /vns_what page sure does paint a rosy picture of the VNS, but does not give a complete picture IMO. A few comments:
The section under "Does it really work?" claims up to 60% efficacy. Cyberonics claims a peak of 43.7% efficacy at 2 years and then a decline in efficacy after that (from their own studies):
The There must be some bad side effects! section completely glosses over the numerous serious risks involved with the device (as listed in the VNS Physician's Manual). Spend a bit of time reading at the VNS Message Board for first hand experiences with the system to get an idea of the real life problems that patients are struggling with when the VNS causes problems. They may not be typical, but they are severe and life threatening in many cases.
The VNS has permanent consequences once implanted. For example, BirdBomb, the admin of the VNS Message Board, cannot get an MRI done on her neck area to check for a non-VNS related problem. She had the VNS turned off and the generator explanted, but they won't remove the coils from the Vagus nerve because it's too dangerous with all the scar tissue from the implant surgery.
There are some other, safer alternatives to the VNS (LGIT, Modified Atkins or Ketogenic diets, Neurobehavioral Therapy, EEG neurofeedback) that have been studied and shown to have a higher efficacy rate than the VNS. They should be presented as an option before the VNS IMO. At least they don't have permanent consequences!
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