Posted by jerrympls on September 12, 2003, at 21:34:37
In reply to Re: Surgery tomorrow: removal of VNS implant, posted by LifeTime on September 9, 2003, at 10:54:12
> Dear Jerry,
>
> I am extremely glad to also read that you “have to run off to work.” To me, as a support person and caregiver, that is an extremely important and favorable sign. I do hope all continues to go well for you.
>
> 1- If you don’t mind, I would appreciate if you could also tell me which study site you were affiliated with?University of Minnesota
> 2- I presume that you were part of the D-02 double blind study?YES
> 3- Do you know if you were initially activated or were you part of the placebo group?
I think I was initially activated because one day I put a walkie-talkie up to my chest to see if it would cause any interference and the walkie-talkie DID give back interference. My brother who is an electrical engineer said that that would have mean that it was activated.
> 4- When you were activated, how did you actually know you were activated?When I was activated after the 3 mo. blind period, the doctor ramped it WAY up and it took my breath away and caused a huge tickle in my throat and made me cough. I must say - a couple hours after words I was in kind of a "high" mood - not manic - but kinda excited.
> 5- Did you experience any noticeable side effects?Side effects included (on the higher settings) voice alteration (sounded like my voice would go hoarse all the sudden), exasterbation of my asthma, and a slight tickle in my throat.
> 6- You mentioned, at first that you began to feel some relief and then it sort of stopped having a positive effect. Did you attempt any adjunctive treatments? If so, would care to share with us?
Approximately a couple weeks after they activated me - they kept it at a somewhat higher level - I could NOT feel it, but it was at a higher setting (they told me). Well, after a couple days my anxiety melted away and I had a brighter outlook on life - kinda overnight - nothing too drastic - but I did call my mother and tell her "I think it's working!" I noticed that I wasn't annoyed by little things that had annoyed me before, I wasn't so worried all the time and I had a slight improvement in my mood. However, after a week or so, it faded away. They tried to get it back with increased settings, but to no avail.
In between trying different settings, they docs would work on my meds. I was on a tricyclic + dexedrine, SSRI + Provigil, SSRI + Seroquel + Dexedrine + ativan and stayed on that for a long time. At one time they tried to add Topamax, but it didn't have good effects for me.
> 7- Was there any specific reason that prompted you to decided to explant the device?Biggest reason was the problems I had with it causing my asthma to worsen. When it would go off - especially in the winter - I would have stronger bronchial spasms. I would say I have a mild to severe case of asthma. So, I had it turned off for 3 months before explantation and my ashtma calmed down. I went into the hospital because my depression worsened (not due to the device being turned off in my opinion) and I started Nardil to which I repsonded MUCH better.
> 8- Did anyone make a recommendation to you to deactivate the device for a period of time and then try reactivating to see what happens?Yes, the study coordinator and the overseeing psychiatrists.
>
> Although we live in South Florida my wife’s doctor, Dr. Paul Goodnick was associated with the Univ. Of Miami School of Medicine and he was instrumental in helping to get her into the initial study at the Medical Univ. of South Carolina in Charleston. As part of the deal we had to agree to move to Charleston for three months during the acute phase of the study. We still continue to travel up to Charleston, on a quarterly basis, as part of our agreement. Until the FDA approves the device they remain responsible for her care.
>
> Your situation and case history is of much interest to me. I don’t me to pry into anything that you do not wish to divulge. As I indicated, the gag order has been removed and I have all along made a sincere effort to share our experiences, research and knowledge with a number of VNS study recipients as well as others that suffer MDD. Although my spouse is depression free I still continue my research, readings and collaborations as a backup and safety net, just in case. Her case history has been filled with numerous refractory episodes to various treatments so in a sense I personally can never quite get too comfortable and complacent.
>
> I look forward to your sharing you’re experiences and knowledge with us. Also, if you don’t mind, I would like to write to you personally. Is this acceptable to you and has you’re E-mail remained the same as listed on this message board?
>
> Once again, thanks for taking the time to share with us and our best wishes for your wellness.
>
> .
Sure, please email me anytime........
poster:jerrympls
thread:255190
URL: http://www.dr-bob.org/babble/20030912/msgs/259505.html