Posted by LifeTime on September 14, 2003, at 13:03:02
In reply to Re: Surgery tomorrow: removal of VNS implant » LifeTime, posted by jerrympls on September 12, 2003, at 21:34:37
Dear Jerry and Ponder,
I would first like to thank you both for taking the time to share with us your experiences. As you well know because of the suppressed communication during the study it was very difficult to obtain any information, added to the fact, no one really knows what an optimum setting is. As I’ve often mentioned, anyone attempting to treat the illness of major depression on a long-term basis will eventually learn that it is nothing more than a “trial and error approach” to wellness.
One of the difficulties I have as a support person is when I read ambiguous statements of fact such as Jerry indicated:
“…the doctor ramped it WAY up and it took my breath away and caused a huge tickle in my throat and made me cough.”
The problem is it lacks specific settings. When my wife was first activated they turned the device on at the default settings, one of which was the amplitude at .50 mA. We all noticed an immediate voice change but no detrimental side effects. Since she was depressed at the time and wanted to recover quickly so she pressed the researchers to increase the amplitude because she wanted to feel better as quickly as possible. At that time, they told us they had no information indicating that higher amplitudes were any more efficacious than the lower amplitudes. She insisted they raise the amplitude. They increased the amplitude to .75 mA and she responded by “hitting the roof” with jaw pain in the lower rear quadrant of her jaw. They lowered the setting back to .50 mA and we left the setting at that point for several months. The point I am trying to make is that .75 mA was intolerable for her to take initially and today she is at 2.25 mA without any side effects and depression free. I am only trying to emphasis the importance of being able to deal with precise information when discussing various treatment options. We really do not know what number it was for Jerry when “the doctor ramped it WAY up.”
As a support person, had I been one for you Jerry, I personally would have held off on the explanting option. But since that is neither here or there what is more important is a “Bravo” to you for advocating for your own wellness and taking as much control over you’re life’s decisions as possible. We wish you continued success and wellness with whatever treatment options you choose and we applaud you, once again, for advocating for your own wellness.
Ponder, I understand your concerns with vanity. My wife, Joyce, no longer brings up or discusses the incisions. The incisions were the least of her personally concerns. The neck incision kind of blends in with the natural folds of her neck although I can distinquish the sort of “looping” outline of the lead. The incision for the generator, above her left breast, is hardly noticeable. Joyce is petite and wears kind of skippy bathing suits but she doesn’t feel at all self-conscious about the surgical marks. I guess more important to her is the fact she is no longer depressed nor does she have any side-effects from device. She has no sensation whatsoever of the device cycling.Your idea of using the magnet when needing to speak for any length of time is a good one. The only time my wife uses the magnet, by taping it to her chest, is in the event of any medical procedures or when we want to check that the generator is still functioning. We insisted upon having the secondary or magnetic settings activated. These settings are set slightly higher so that if she swipes the magnet across the generator she gets enough of a jolt to know the battery is still working properly. She is approaching four years since her implantation and the last thing we want to happen is for the battery to die just after our quarterly visits to the researchers and her relapsing into depression because the device is not functioning.
Should anyone have any reason to discuss the VNS I shall continue to monitor this thread, the Cyberonics Message Board and/or if you list an E-mail address I shall gladly respond to you and share our experiences.
My very best wishes to you all for all the good you would wish for yourselves.
.
poster:LifeTime
thread:255190
URL: http://www.dr-bob.org/babble/20030912/msgs/259917.html