Tune in, Turn on...

[Eric Dittmar]

Rich,

So let's assume four leads on each electrode:

State 1,2,3,4  one right lead on. (Voltage is held constant)

State 5,6,7,8  one left lead on

State 9,10,11,12 left and right on (1-5, 1-6, 1-7,1-8)

State 13,14, 15, 16 left and right on (2-5, 2-6, 2-7,2-8)

State 17,18, 19, 20 left and right on (3-5, 3-6, 3-7,3-8)

State 21,22,23,24 left and right on (4-5, 4-6, 4-7,4-8)

All 24 unique states must be tried to optimize the device.

I'm going to present this simple algorithm to my doctor and ask that he take an hour or two to go through it.  What do you think?

Eric

[Rich Hayward]

Others may want to chime in with their experiences, but here is what I've gotten during the past 2 years:
 
My psychiatrist knows nothing or can't/won't disclose any technical information. I hear about the supposed successes and that my experiences are unique etc. At this point he's even stopped prescribing med's because they do no good.
 
The guy who programs the devices knows nothing or can't/won't disclose much info. I've been told that my setting was changed to 4 then 6 and they programmed it to stay on for 12 hours then go off for 12 hours. Beyond that, crickets chirping.
 
My view of the entire process is that you go through months of testing to get in, and if so, they drill holes into your head and put in an experimental device for free. Your followed monthly for 12 months and it appears that sometimes it works and sometimes it doesn't (though I personally know of nobody who has benefited to any great extent). I've turned the thing on and off and woken up the next morning a totally different person from an emotional standpoint.
 
That being said, I would still do it all over again because if your to the point that I was (and assuming the others too), your desperate enough to try anything. The device does work, but not always in a positive way. The only reason I'm still in the study is that I'm hoping these people are going to find the fairway at some point.
 
As far as your conversation with your doc, go ahead. It can't hurt and maybe you will get some useful info. I'd like to know though if you've been implanted or are still deciding?  

Rich Hayward




 

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Date: Sun, 16 May 2010 18:40:02 -0400
Subject: Tune in, Turn on...
From: dittma...@gmail.com
To: dbs-for-d...@googlegroups.com

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[Eric Dittmar]

Rich

I had my DBS implanted at Toronto Western hospital about three years ago.

Eric

[278-005 Blogspot]

Good luck with convincing your handlers to try the other leads.  My crew was adamant the lead was in the right place and basically refused to try any other leads even after I threatened to quit the study. 

I did get to a very good setting after a year (probably only being on 6 months), then I reduced my meds (without doc consent) and it almost all went away.  Now doc trying new meds but its the "try it for 6 weeks before we adjust again" mentality.

I know of 1 Canadian who has had extremely good results and there is someone in the Dallas study that reports complete remission. 

Hopefully they are learning from what works and what doesn't and there are more good things to come.  I hope.

Someone in Europe is doing 4 leads and they do actually test each lead over a period of a number of weeks.  (What a concept!!!)

Best of luck - hang in there

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From: rhayw...@hotmail.com
To: dbs-for-d...@googlegroups.com
Subject: RE: Tune in, Turn on...
Date: Mon, 17 May 2010 00:23:23 +0000

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