Saturday, May 3, 2014

DBS for Depression Studies
Map of 24 studies found by search of depression and "deep brain stimulation" -parkinson -anorexia -obsessive ...  from
16 of these are considered 'Open', as in either recruiting or about to be. (Map should be clickable, Click "Open" for just the open ones).

In the latest paper released with  Dr. Mayberg, Patricio Riva-Posse, MD, Emory assistant professor of psychiatry and behavioral sciences says "...results suggest that clinical outcome can be significantly influenced by optimally modulating the response network defined by tractography," [Um, that's a mouthful, but I'm going to translate in laymen: 'using the latest in neuro-imaging, there is a real good chance we can pinpoint exactly where the brain needs some stimulation']

(added... a shorter synopsis

Precise brain mapping can improve response to deep brain stimulation in depression

A new study using MRI analysis of the white matter connections examined the architecture of this network in patients who demonstrated significant response to SCC DBS. (Source: Emory Eniversity)
So what do these pretty pictures and map have to do with each other? Everything for the future of DBS and mental illness (not just Depression).  In the map above, I excluded anorexia, OCD et al.  (Not all studies will proceed and I am sure not all studies are listed).

So the race is on.  The German-Bonn (Nucleus Accumbens) studies look "rewarding" and are moving to the Americas (UT Houston), but Bonn is continuing to chart new frontiers; while Emory is "focusing" in on reliable mapping.  Although I haven't heard anything lately, I'm sure the Cleveland Clinic still has their "head" in the game. (Bad puns intended.)

Locations mentioned in clinical trials:
  • Nucleus Accumbens
  • Subcallosal Cingulate 
  • Internal Capsule 
  • Superolateral Branch of the Medial Forebrain Bundle (slMFB)
  • Ventral Caudate Nucleus
  • Inferior Thalamic Peduncle
The studies seem to be split between the 2 major medical stimulation device manufactures although I can find fewer results from the Medtronics group.  I am not a Doctor nor Neuropsychologist so these are layman's extrapolations/interpretations/translations.

Now for my usual optimistic but caveat emptor: anyone considering being involved in one of these MUST fully understand the potential risks.  Here is a YouTube video of a fellow Brodmann participant that describes his terrible experience related to the surgery and follow-up care.  However even he verbalizes optimism for the research towards the end at 14:10; calling for more oversight, not an end to the studies.  Good luck Steve, and thanks for trying to pioneer this forward.  I hope something can be done soon for both your pain and for the depression. [Stanford - wake up! In my opinion, your inability to rectify this situation is soiling your name, the study's name (which needs no extra soiling at this point), and the worst - possibly contaminating future studies. And yes, I have seen Stanford  IP addresses view my blog, so I'll know when you see this - same for you ANS].

And though I don't like to give advice, here is my 2 cents on my study's current dilemma via a suggestion I recently had:  Get the exact details, in writing, of what happens if the study is cancelled.  Will they continue to provide replacement units if your insurance won't?  The question is NOT what happens if the FDA doesn't approve it - although you need to ask that as well, but even if the FDA approves it and your insurance company won't pay for a replacement.... 

Tuesday, February 4, 2014

Progress Is What We Look for

Dr. Mayberg shares more of her information in this link.  "Meet the Scientist".

On the bright side, it looks like the data from both those who got some relief as well as those who may not be responding is being used to map out new strategies. 

And more details on the Broaden study from the neurocritic blog. The Broaden study is one of many that have been going on, albeit the one that seems to be the largest. 

I am obviously feeling a little mixed. Not having answers to what will happen in the study is a bit concerning, but I am optimistic because the data is pointing to more (and more efficacious) techniques for the future of battling this ugly disease.

Hang on folks....  progress is being made, even though it may not feel that way.  A very good friend used to have the catch phrase "Progress is what we look for".

Thursday, January 9, 2014

Depression Descriptions (And new links)

The misunderstanding of depression is terrifying.  For a disease that is real, there are so many people who still believe depression is a weakness.  I've recently run across a couple of good descriptions of the horror of this disease and the debilitating effects it has.

The first comes from a book published in 2005.  The book is primarily about stress and how humans deal with stress in comparison to other animals.  From my limited understanding of the studies discussed in the book, the bio-chemical interactions haven't really panned out for finding cures or treatments. However, the author's description of the depths of depression is one of the best I've read - especially considering he has never experienced it himself.  The book is "Why Zebras Don't Get Ulcers".  The link will take you to Amazon just because that's where I got mine.  Chapter 14 brings Depression into the mix with the stress that  the author, Robert M. Sapolsky, covers.  For anyone who has loved ones who "don't get it",  Sapolsky contrasts the "blahs" with the paralyzing symptomology of major depression in a layman's terms, in the very first part of that chapter.  The parts after get a little more clinical but still very understandable, going over the biology of depression, etc. 

I recommend this because one of my loved ones happened to read it.  She and I had a very meaningful discussion about my condition and I finally felt like she understood.  (Again, if you do pick up the book, be aware that the chemical studies that sounded very promising haven't really panned out.  The Glucocorticoids, according to my team, are markers but not predictors, of depression.  You don't have to get that in-depth into the book in order to use the Depression section to help others understand the disease).

The second great description I found comes from TED. is one of my favorite pleasures.  Some of the greatest minds and speakers are found on TED on an amazingly wide variety of topics.  Check it out next time you've flipped through all the TV channels and found nothing.  The talks are usually under 20 minutes (which is great for my own ADD).  Inspiration and education.

The TED talk that blew me away is by Andrew Solomon.  It is titled: "Andrew Solomon, the secret we share".  I've not read it, but he wrote a book that obviously won some great kudos (from TED: Solomon’s last book, The Noonday Demon: An Atlas of Depression, won the 2001 National Book Award for Nonfiction, was a finalist for the 2002 Pulitzer Prize, and won fourteen other national awards.)

Regarding the anonymous posting from last month and the Broaden Study, my own belief and hope is that everyone realizes this is a looooong-term study.  I believe they had implants in 2013, though I have no specifics, logically one would presume that their 'research' would continue for 4 years and 6 months from the last implant.  But, that would be logic.  I know from following one of the original Canadians that she has continued to improve.  But she has Canadian medicine - who knows, maybe there is a loophole in the new Affordable Care mumbo-jumbo that would make insurance companies accept our "pre-existing" conditions and DBS treatment for those who have gotten relief.

Herb's commentary on the FDA and trial studies has a lot of merit and I encourage anyone interested in what has happened in the past follow his links.  I pray history doesn't repeat itself.