Wednesday, March 25, 2009

3 months and counting

I made it to my 3 month check up. They had a few more questions for me - but pretty much the same as the other check ups.

I found a dbs group on yahoo - they are a collection of Parkinsons & ET survivors who have had the dbs for movement disorders. There is a wealth of surgical information there if anyone is interested. Of course, the rest of the information like how they get programmed doesn't really apply. DBS group on Yahoo. You do have to be a member to read all the posts.

I've got a few more links to share. One in particular was interesting - Dr. Mayberg interview on audio. Although a bit long, it has a lot of the details about the study and the expectations etc. She talks about fine tuning this to better understand exactly what kind of treatment will work best for a person with depression. There are probably multiple causes for depression and multiple treatments. It sounds like she is trying to find a way to diagnose which type of treatment will work best for an individual patient. Will talk therapy work? How about a certain type of antidepression medicine? If they can get their fMRIs/PET scans and other assessment tools to really fine tune what will work for a particular patient's brain, it would be wonderful. Which chemicals are missing - then take XXX antidepressant. Chemicals ok but neuron firing is slow in this area - then try Cognitive Behavioral Therapy. Tests indicate chemicals ok and neuron firing is too active - then DBS is for you. It's really exciting and fascinating stuff.

Also, it looks like Medtronics has officially entered the race. Here's brainimplant's blog as well as the original press release which is buried in the OCD release as well.

Here's a link with an interview to one of the first to undergo this experiment. Pretty good stuff!

Since I'm sharing only the physical attributes of my experience so far, about the only thing I don't think I've mentioned is the lumps on my head where the holes are. For the longest time I felt like Hellboy with his horns shaved down. I'm sure 'feeling' it with my hand up there makes it seem worse than it is. Also, the wire from the scalp to the generator tends to be a little 'stiff' in the mornings. I don't know how else to describe it - but a little tender stretching makes it go away. Both of these things are very common to the DBS surgery and really have nothing unique to DBS for depression, but I thought I'd bring them up.

I'm at the halfway point in the study. Another 3 months and I will for sure be turned on - if I'm not already.


Anonymous said...

Would you care to comment as to your mood state over these past 3 months?

Would you also care to speculate whether you believe you’ve been activated or not?

I wish you well.


Anonymous said...

Personnaly my main problem is my stimulator that is very visible because I am skinny. It is been 3 1/2years since my own operation and even last spring they had to make a small adjustment to my stimulation. It is really the most precious gift I receive because since my operation I went through really very difficult time and I don't think I would have been able to do as well as I did without my DBS.
If you want o read about the very beginning of the pilot ANS projet go to
You will read about how people felt about that creazy operation that was perform on me: I was the number one of that pilot project

Anonymous said...

#1 - the article at the end said "The UBC team initially told The Tyee that their first patient had yet to "respond" to the DBS treatment." Was that you and so it did catch on and work for you? How many times has your battery had to be changed?

Anonymous said...

from Sadano,
The first patient was me, and yes I responded very well but we had to make adjustment. I say we because I was keeping a very clear record of what was happenning and that helped my doctor to do the adjustments. I am not in total remission butI am doing very well thank you.
I am extremely lucky because I am the only one of the 5, I know about, who has not needed a battery replacement yet.

herb said...

Based upon your post of March 25th you should be at the 6 month mark.

If you were a control subject they should be activating you at this point.

If the restrictions are off would you care to elaborate on your mood state over these past 3 months? Do you feel you have benefited from this therapy option?


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