Jeremy, who has been a member of this site for quite a while, was approved for a VNS implant through the Cyberonics dosing trial and then at the last minute the trial was closed pending a decision from the FDA. Desperate for wellness he is leaving no stone unturned. His insurance co had already denied him at every level and we are pursuing it through the commissioners office. That said, my reason for asking for your help is to ask if you would be willing to 1. write a letter about your experience with VNS and help shatter the viewpoint that it is experimental or not medically necessary and 2. be willing to speak with a writer from a newspaper I hope will be doing an article on this situation. Please let me know if you can help us out. Thanks, Yvonne
You can read "my story", but we can't personally give you information. I did a story for the New York Times in 2006.
:D HI ylk!
You wrote that Jeremy has been a member of this site for quite a while, and I do apologize that I don't recall his screen name or visiting with him. I am hoping he will post and visit with us.
I completely understand everyone who struggles with depression (or any illness), and their deepest desire to become well. I have been there, and I respect that you are assisting him in any way you can.
You can read about me as well in the "Your Story" section. I don't believe I will in any way be beneficial for Jeremy as my experience with VNS ended up not being pleasant. Although I in no way discourage anyone from researching the use of VNS, or using VNS as a treatment option providing they are a proper candidate, etc., I do not believe entirely this device is out of it's investigational period.
There is no doubt in my mind that VNS can help some people with depression and epilepsy. My feeling is though there are so many things that can go wrong with using this device. People have had serious health problems because of the use of VNS, and others have had exaggerated mental health issues because of the use of VNS. Some people have had both, and there have been an unremarkable number of deaths due to the use of VNS. I firmly believe as well that there needs to be answers as to why these horrific things are happening, then steps taken to improve the device-or what ever it may take-before more studies are done to figure out what is the most theraputic miliamps.
I hope you and Jeremy find what you are looking for to help him become well. Birdbomb posted to you the link to the VNS Therapy Access Program in another thread you started. I encourage you both to research that program as well. Please let him know there are other treatment options available for him to research and talk over with his treating doctors. Please ask him to visit the board and post.
Take care!
B)