Wednesday, January 7, 2009


Well, I made it to the 'randomization' session. That's where the programmer connects the generator to his gizmo and then "adjusts" the device. As mentioned previously, since it's a blind study, I don't know if I'm ON or OFF. He was very nice and explained he has to spend the same amount of time on those that are off as those that are on, so we're completely clueless. (Like the techno-jargon? - gizmo & device? - my terms not Mr. PhD's).

As with every session from here on out for the next 6-12 months, I take the depression tests, answer the handler's questions, see the programmer and wait.

On the physical side, the leads haven't bothered me any more and though the generator is still sensitive from time to time, it's not as bothersome as it was. As I said, I'm thin and the surgeon said it will be awhile before the scar tissue builds up enough for it to not be noticeable at all (sensation-wise). It is still very noticeable when my shirt is off.... but - the Maderma scar medicine stuff is working pretty good. The line is really small and I think it may be gone in a couple of months! The itching though.... OMG.... thought I was going to scratch a hole in my shirt! Luckily that's pretty much gone also.

At the last session with #1 doctor, we discussed me not getting my hopes up. Just take things slowly. He doesn't know whether I'm on or not either. Only the programmer knows and I don't think he takes bribes - but I'll ask next time!! LOL.

I don't want to jeapordize anything by revealing too much about my mood. So I'm just being patient.

Congrats PsyFi. I'm putting my expectations on hold for 6 months - just take it 1 day at a time. (and thanks for the encouragement).

I will share that I had a day of paranoia over the anonymousness of the blog etc. I don't want to jeopardize the study and I don't really want any well intentioned acquaintances to say - hmmmm that sounds like this guy I know. So I pulled the tags & labels. [Cover story info was here] - the point of the sentence is: I couldn't stand for one of my children to be taunted that her daddy has 'depression' and had to have wires put in his head.... still too much for me to handle).

A year from now I won't care!!! (Ever the optimist).


Anonymous said...

DBS Trial,

My thumbs and best wishes remain up for you and all those similarly challenged.

I hope y’all realize how fortunate you are to have these opportunities for hope.

I spoke with a young man yesterday who just posted to a VNS blog and I wanted to share the importance of having hope; win or lose.

“The worst day of my life was yesterday. I was told by someone that my
clinical trial of having a vns implant was suspended and most likely
canciled. This was my only shot at beating depression and I believe in
my heart I will never have a fair chance at a life. I live in KS and
basically have no one to help me. The insurance company rejected 2
letters of appeal from my doctor and I and I have no where else to go.
I know in my mind this treatment will most likely work for me, but
because of an insurance company I will never have a girlfriend, child,
or better life. I'm living in hell 24/7 and I have been sick for 12
years. How can people sit around and watch other human beings just die
and tell them no we can't help you, but when it comes time to burry you
in the dirt you have to pay for it? Yes I'm ranting and raving,but what
the hell would you do if no one cared if you were dying day by day
slowly and no one could help?

If you have any information that would help me make it out of this
hell, feel free to send me an email, my adress is listed. Until then I
will be living a nightmare over and over while my parents watch me die.”

I do hope you’re not only winners in getting this opportunity but most importantly win the wellness lottery.


Anonymous said...
This comment has been removed by a blog administrator.
Anonymous said...


Thank you for sharing the information with me. I shall pass it along to the young fellow who is in need of hope and encouragement.

I am a very, very long-time support person and caregiver to my spouse as well as a proactive mental health advocate and activist endorsing education for the patient and his/her support people as well as encouraging hope and persistence.

Once again, thank you and I am thrilled for you as I am for anyone who achieves any degree of relief from what I refer to as “the Beast” through any reasonable means.


Anonymous said...

you need to contact someone at
They are currently qualifying patients and performing Deep Brain Stimulation Trials.
Several patients, including myself, have already had the procedure. It saved my life, and it is my prayer that it saves yours as well.
I lived everyday just the way you described; you have to find a way to initiate this DBS trial.
May God bless and watch over you.

[Administrator modified content to remove #s)

Anonymous said...

To Administrator; sorry about the names and numbers you had to modify...I finally revealed what a newbie I am to blogs...I will be more careful in the future...

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