Monday, June 22, 2015

Where from Here?

If anyone isn't aware, BROADEN study is closing it's doors.  The last round of participants are being implanted with rechargeable devices (BRIOs), if they want.  (This eliminates the 15-24 month battery replacement surgery cycle.  Rechargeables may last 10 years, I'm told).

There are more formal links etc at:

I've received a number of email this year including 2 in the last week asking if I am ok, since I haven't blogged.  I am pretty much in the same place I have been for the past couple of years.  I underwent my rechargeable battery replacement late last year.  Unfortunately, I was down to 0 while waiting on the approval to implant the rechargeable.  I struggled for a few weeks afterwards and my center saw me and made slight adjustments to compensate.  (Not sure everyone's center is as compassionate).

On August 11, 2014 I was texting with my oldest daughter.  She wrote that she had just heard Robin Williams died.  I texted back that he was bi-polar and I hoped it hadn't happened by his own hands.

We now know he was suffering from a number of brain issues.

I was going to dedicate a blog to him. At the time, the big ALS bucket of ice campaign was sweeping the nation.  I had hoped some of his close, famous, friends would put something together to bring as much attention to Depression as ALS.  (The father of an acquantence has ALS and it is a terrible disease, so I am not dogging that effort at all.  Just disappointed there wasn't more of a nationwide outpouring about losing Robin).

I did suffer a real ouch moment though.  Someone who I thought understood depression said something that made me realize just how difficult it is to change public perseption.  While watching a special on Robin, my friend said "I don't understand.  He had money, fame, family, love.  Why would he do such a thing?"


I was taken back by the comment.  This person knows what's in my brain.  I admit I took it a little personal since in my mind, I had money,  family & love (missed the fame somewhere).  The difference between Robin and me?  8 less ounces of PAIN.  (And now a gizmo that pumps electricity into my head disrupting the really bad thoughts).

Depending on the paper you read, there are between 125 and 300 of us with DBS for depression.  I've stated it before and will again, my center shouldn't have failed a FDA futility study.  It sounds like Dr. Mayberg's groups at Emroy wouldn't fail one.  There are a number in remission and a larger number that have been helped - enough so that they opt to get the rechargeable battery in, as ANS steps away and orphans us.  So this works - given the right conditions.  I pray the critics don't throw the baby out with the bathwater.

And I am grateful to the opportunity afforded me to be a participant.

I'll let you know what the separation papers say, when I get them.  No  need to show any particular loyalty to the cause - the cause is folding up the tent and walking away, it sounds like.

Emory is continuing as are a few other places.  I believe the disease known as depression will be divided into different parts and cures or ways to manage the different strains will be developed within a decade, or two.

As Herb, the VNS expert and advocate of participatns has warned, what will happen when the FDA doesn't approve it and ANS doesn't continue care?  I'm sure I can last 10 years with this thing - but then what?  I'm not real fond of calling up my health insurance provider and saying, "Oh, by the way, I had experimental surgery on my brain and never disclosed it to you, but now I need help seeing a specialist."  Think my rates will go up or will they just drop me?

Time will tell.

Again, if you are one of us and haven't joined our closed support group, email me and I'll let the powers that be know.  There are some wonderful people who started the group and check in on it regularly. (I'm hit or miss - but I'll get your name submitted).

More - when I feel like admitting I have this and have something of substance to say.

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.  

Saturday, June 29, 2013


As I've hoped and hypothesized, Dr. Mayberg, who is one of the founders of using DBS for depression, has released research under a NIH grant relating to being able to diagnose what treatment method will work best for each individual with depression.  i.e. Run the test and it will show whether an SSRI, SSNI, Cognitive Behavior Therapy (CBT) or something more radical like DBS stands the best chance of working.  (They haven't refined it that far but the initial research is fantastic).

In the linked article,  they correlated activity in the brain called the "anterior insula" with CBT and a SSRI.  Based on either low or high activity in the insula, the type of treatment that worked best for the patient has a high correlation. Another article ( gets a little more technical and the actual JAMA article is at

Pretty cool stuff, if you ask me.  Of course this is all very preliminary work but it's a giant step forward.

For those interested in DBS, there are a number of research studies using different locations in the brain.  There are links to the side and in the blogs that refer to the actual locations and that the current theories hold that, like many things in the brain, depression is a circuit of sorts.  That circuit runs through a number of areas and the current research is showing that there are a number of places that DBS works. Finding the place that works the best or to extend this latest research, using some type of imaging may lead to prescribing a certain anti-depressant, seeing a therapist, or in severe cases, which place in the brain to insert some electricity.Woo hoo.

Sunday, April 14, 2013


Hope is one of the hardest things to muster when suffering deep depression.  Unfortunately, too many lose that last ember of hope.  I'm publishing a couple of really exciting links.  I've mentioned before that there are numerous DBS studies around.  I usually only hear from those in the US in the St. Jude study.

The first is great news - if the USA can find the money.  It confirms what I predicted many blogs back - that the amount of research and technology advancements that we've seen in the last 30 years regarding the heart, will be replaced by research of the brain.  (throw in the human genome project as another great step forward).  Here is the NY Times link, but HOPEfully everyone suffering from depression understands the potential of 10 years of concentrated study of the brain:

Next up, and the impetus for me to write about it is the research in Germany where they are implanting it yet another area.  I won't attempt to explain the different areas being explored but they all seem to be interconnected in a circuit, that when disrupted, provides relief from this Hell called Major Depressive Disorder.

Another link about the same study:

And here is the HOPE... for anyone wishing they could get in a study or find ANY way to rid themselves of this disease, hang on.  This is the third "successful" area of the brain that I am aware of to be probed.  I personally believe we will discover there are multiple 'depressions' and different treatments will be developed for each.  I've seen the inside research on some new TMS that is outstanding (but not yet available at your pharmacy).

Not being a brain surgeon, I'm not sure if this is the same area Bonn was playing with before or not.  It sounds like a new area - so there may be 4 areas being studied, plus things like VNS and TMS. 

But this is exciting news.

There is good reason to have HOPE.

Saturday, February 9, 2013

Interesting Ethics

A person who contacted me has this link posted on their facebook.  Absolutely interesting article.  (It is a pay per view research paper but the first 2 pages are worthwhile).  This isn't to try and scare anyone away from the procedure but to highlight the fact that the research going on is dealing with some of the worst depression imaginable and there are risks.

As a long time advocate of the research protocol mandating that a person be assigned to a counselor or therapist, I believe Dr. Gilbert has made the point.  My opinion, for what it is worth, is that a therapist (who may be blind to whether the person is turned on or not) should check in with patients for the first few weeks after every visit for a "tune-up".  And of course, be available whenever the person needs someone to talk with.

As a general statement, we don't like socializing much and definitely don't like talking about how we feel if the gizmo doesn't seem to be working.  But ethically, I would think the IRBs should require it.  (And not just for us depressed, but probably for all experimental DBS).

As for me..... nothing really new to report.  What I've discovered in myself though is much less interest in following the subject.  It's almost like a denial reflex that I should stay abreast of all the research on DBS.  Not reading about it makes it not real for me, so to speak. I'm overall pleased with the continuing research into TRD and depression in general.  Some of the outcomes of the latest TMS are FASCINATING to say the least, but I find myself less "glued" to the Internet over depression.  Denial is a wonderful thing.

Best to all.  Wish NM would contact me.