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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 banffgirl on Sat, 2008-03-29 - 13:42
dear epi_help,
yes it is a very passionate topic and will remain so. we with the vns have it because it is our last hope of a normal life and to stay out of the ers and hospital rooms. want to see my medical bills from last year alone? scary and i have insurance, if i didnt i would be living under a bridge by now. i agree on the personal attacks but what i dont agree on is some one advertising their own website on e.com with information that doesnt agree with epilepsy.com website which has medical staff to back up everything. we depend on you to take care of giving us the best possible info when our doctors offices are closed, when a question passes our minds. we need real info, not an ad by someone who is not a doctor nor has doctors on his staff on his website to back up his info. my only request is that anyone should not be able to advertise any other website on e.com for their own websie to give unsuspecting people, ecspecially new people to epilepsy to give them misinformation. their neuros or epitologists are their main point of info for their course of treatment, and we will share our experiences with different drugs, or experiences like vns but let them know that their doc is the one to talk to about this. knowledge is power. i was told i made my decision for my vns by reading my forums on vns. this is far from the truth. i used that as info to give me a better perspective on it thru others experiences, good and bad. thats what these forums are for, right? if not, why do we have them?
the vns has already reduced my tonic clonic so i can leave the house without fear of having one everytime i step out the door to go shopping. it is a God send. the way i look at it, if you dont have personal experience with something then dont talk about it. this person does not and that is where the passion came in. you can not judge a medical devise for epilepsy when you have no experience with it . my hubby could, he lives with me, and he thanks God every day for getting his wife back after a 5 year battle with uncontrolable siezures.
we with long term epilepsy do our best to share our knowledge with people new to epilepsy. i am almost 50 and have had it all my life. it is genetic but the siezures have changed over the years. in types and controled to uncontroled shortly to controled to now uncontroled for long term, still uncontroled but tcs are so much better. so yes i do take offence to people whose own website talks about driving when siezures are not controled and giving info about how to control siezures with other methods their doctors should discuss methods not a none medical website, and then call it educating. thank you for your understanding in this topic in advance.
God Bless,
banffgirl
life is fragile, handle with prayer.
dear epi_help,
yes it is a very passionate topic and will remain so. we with the vns have it because it is our last hope of a normal life and to stay out of the ers and hospital rooms. want to see my medical bills from last year alone? scary and i have insurance, if i didnt i would be living under a bridge by now. i agree on the personal attacks but what i dont agree on is some one advertising their own website on e.com with information that doesnt agree with epilepsy.com website which has medical staff to back up everything. we depend on you to take care of giving us the best possible info when our doctors offices are closed, when a question passes our minds. we need real info, not an ad by someone who is not a doctor nor has doctors on his staff on his website to back up his info. my only request is that anyone should not be able to advertise any other website on e.com for their own websie to give unsuspecting people, ecspecially new people to epilepsy to give them misinformation. their neuros or epitologists are their main point of info for their course of treatment, and we will share our experiences with different drugs, or experiences like vns but let them know that their doc is the one to talk to about this. knowledge is power. i was told i made my decision for my vns by reading my forums on vns. this is far from the truth. i used that as info to give me a better perspective on it thru others experiences, good and bad. thats what these forums are for, right? if not, why do we have them?
the vns has already reduced my tonic clonic so i can leave the house without fear of having one everytime i step out the door to go shopping. it is a God send. the way i look at it, if you dont have personal experience with something then dont talk about it. this person does not and that is where the passion came in. you can not judge a medical devise for epilepsy when you have no experience with it . my hubby could, he lives with me, and he thanks God every day for getting his wife back after a 5 year battle with uncontrolable siezures.
we with long term epilepsy do our best to share our knowledge with people new to epilepsy. i am almost 50 and have had it all my life. it is genetic but the siezures have changed over the years. in types and controled to uncontroled shortly to controled to now uncontroled for long term, still uncontroled but tcs are so much better. so yes i do take offence to people whose own website talks about driving when siezures are not controled and giving info about how to control siezures with other methods their doctors should discuss methods not a none medical website, and then call it educating. thank you for your understanding in this topic in advance.
God Bless,
banffgirl
life is fragile, handle with prayer.
Re: Resources for VNS Therapy
Submitted by Anonymous on Sat, 2008-03-29 - 06:46
This topic has certainly generated lots of information, experiences, and passion. It's important to share perceptions but let's avoid personal attacks.
Epi_help
Resource Specialist
This topic has certainly generated lots of information, experiences, and passion. It's important to share perceptions but let's avoid personal attacks.
Epi_help
Resource Specialist