Posted by jerrympls on September 12, 2003, at 21:19:44
In reply to Re: Jerry, posted by LifeTime on September 8, 2003, at 0:55:28
> Dear Jerry,
>
> I’m not a regular reader of Dr. Bob’s website but I recently communicated with him about my wife’s favorable experience with the VNS and he directed me to this site.
>
> First, I am sorry that you did not find the device efficacious for your purposes and I do wish you a very speedy recovery from the explanting procedure. Before I give you and the other folks some information on our experiences I would appreciate if you could answer several questions for me.
>
> 1- What was the highest amplitude setting on your VNS that you ever attempted and over how many days did you leave that highest setting?THey never let me see the settings. I do know that the stimulation was on for 30 seconds every 5 mins. And at each setting they tried, they kept it there for 2-4 weeks - depending on my level of comfort.
>
> 2- When they explanted your VNS did they also remove the two coils around the vagal nerve or did they just clip the lead wires as close to the coils and left them in place?They removed EVERYTHING - chest implant and lead wire(s) and coils around the vegal nerve. The ENT doc I have is considered one of the best in the "business." He was involved with the epilepsy trials and surgeries and has dones hundreds of implantations and explantations. He did an excellent job - this time the surgery was a bit longer - about 3 hours - and the pain was a little more - but I'm healing very well.
>
> Your responses would be much appreciated. Incidentally, all the restrictions on the study participants have been removed. I am an active message board member on the Cyberonics website and I post under the name of “Herb.” I am a long time support person, caregiver, healthcare advocate and depression lay-expert to my wife as well as a former facilitator, board member, president of a local chapter of the DBSA and a state appointment as a Guardian Advocate.
>
> My spouse was implanted in December 1999 as part of the initial D-01 depression study. We have battled MDD (Major Depressive Disorder) some thirty-eight years. The road to achieving our goals has required a “trial and error approach” to wellness. To make a long story short, where Cyberonics did not allow any public communication from the study subjects and their support people, I formed collaboration privately with a number of recipients. This collaboration proved for us to be extremely beneficial.
>
> My wife is depression free and off all psychotropic medications for purposes of depression. Adding to the remarkable results is the fact that any situational and/or environmental stresses and/or upsets no longer have a lasting effect upon her mood. She simple gets over the event and carries on with her life. These events no longer cause her to spiral downward into severe depressive episodes.
>
> Her illness is controlled, stabilized and in remission. We are cautiously optimistic that after all these years we have achieved our goals of wellness and long-term remission of her illness. Another young woman with whom I communicate is also depression free without medications at higher settings. It has taken us time to achieve these results as we theorized that the higher amplitudes were the efficacious levels and we directed the researchers to follow our instructions and theorizes. In my wife’s case it took us some time to achieve those higher settings. We were already on our road to wellness when the failed D-02 study results were published and the CEO explained that the minimum settings for the protocol should have been 1.50 mA. We were above that setting, at that point in time, and therefore the reason for my question to you previously about your highest settings.
>
> Again, we are sorry you were not one of those being helped by the device but we do extend our very best wishes to you for wellness.
>
> Anyone interested in discussing the device might want to check out the Cyberonics message boards:
>
> http://www.vnstherapy.com/messagsfs.html
>
>
> Disclosure:
>
> Any one reading my posting please understand that I am a very long-term caregiver, support person and depression lay-expert to my spouse as well as a former DBSA facilitator, president, board member of a local chapter and a state appointment as a Guardian Advocate. I am not endorsing the use of any medication(s), treatment(s) and/or therapy(s). I am just trying to share some of our experiences, research, knowledge and readings over these many years in the hope it may benefit the reader. We have also greatly benefited in knowledge and friendship from the local support groups in our area including the DBSA (formerly the DMDA) and NAMI. Most importantly consult with a caring, compassionate and knowledgeable licensed healthcare professional.
>
>
> .
poster:jerrympls
thread:255190
URL: http://www.dr-bob.org/babble/20030912/msgs/259503.html