Tuesday, April 23, 2019

On and Off

I passed the decade mark just a few months ago and thought I should post.  I've been doing well, dealing with other non-related health issues (auto-immune).  That has brought it's own depression.

I think I previously mentioned I was not using the device.  I would occasionally charge it and run it for a few hours.  I found that it would ultimately bring some anxiety to the surface (the most common side-effect, I believe).

When I could feel the depression rolling in, I have recharged the device and turned it on until the anxiety build up to where I can feel it's uncomfortableness.  What I have found is that a little anxiety is good, if you want to get things done.  I have felt more productive and when the anxiety actually reaches a point it bothers me - off goes the device and I coast. I coast until I realize how difficult it is to get up in the mornings.  How difficult it is to think and stay focused.  How difficult it is to want to go out in public and mingle with friends.  How difficult it must be living with me.

That last one is a nasty thought for someone heavily depressed.  I am not - I am just pointing out the people who care about us don't notice the backslide either.  You don't just wake up one day and say, Honey, I feel depression is back.  And they don't wake you up one day saying, Honey, your depression seems to be acting up again.  No, it's a slow slide into the bad habits that accumulate and make it that much harder to crawl back to "Normal".

A friend recently asked what I knew about TMS.  Very little actually.  But I found an interesting article that recently came out about TMS that references an even better article about DBS for TRD.

Having ignored my device (denial) for months, I missed the second article (Why a 'Lifesaving' Depression Treatment Didn't Pass Clinical Trials), which points out that the longer the test subjects have the device, the better the odds for some success. (Ridding ourselves of all the bad habits that accumulate takes time!) It also highlights what Dr. Mayberg has been doing with her new funding.

My device is ON, currently, and it is the longest it has been on in years.  The anxiety build up to where it bothers me, seems to be taking a long time.  Did I let myself slide back too far?  Probably.  I am at least aware now, that I have slid backwards.  Is it my brain trying to plunge me back into the darkness or hopefully, more situational, based on my current life events? 

I am one of the lucky ones.  But after reading the TMS articles, I have hope for others.  I'm a little leery of the lack of more testing but I am also glad the FDA is not making it overly cumbersome to get this treatment to people who need it.  And at an affordable price.

Now - more coffee and a shower.  Then off to work.

Friday, March 31, 2017

Brain scans may help clinicians choose between talk therapy and medication treatment for depression

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Guess who's got a new published spin on Depression?   

Dr. Mayberg and Emory University.


Well, they could have knocked me over with a feather with all that knowledge!  {In my 3rd blog after surgery, I was hypothesizing about where their research was headed.  8 years ago}

I don't have time right now, but I want to look up this reference at the end:
This study is supported by the following NIH grants: P50 MH077083; RO1MH080880; UL1 RR025008; M01 RR0039; and K23 MH086690.

Gotta run - more later (with maybe video - maybe not)

Article: Brain scans may help clinicians choose between talk therapy and medication treatment for depression

I found the article on a really cool website.

Thursday, March 16, 2017

Whoa...  DARPA?????

I had heard rumors, but this seems to have all the info on the gov checking into DBS for all sorts of Brain Disorders


They confirm my layman's observation that we are talking about significantly different types of disorders - 

Possibly different types of Depression (not just Uni & Bi)

Check it Out:


And Yes, I am doing fine......

Wednesday, July 13, 2016

A One Minute Review

I found this interesting; not conclusive, just interesting.


Monday, February 1, 2016

I'm Still Standing

I haven't taken the time to write lately but only because I'm in about the same place as I have been for years.

The Broaden study is gone and most participants I know are no longer in touch with their centers.  There are a few centers who have offered to stay in touch, but nothing formal. Emory is the only place I am sure is still conducting research.  (Please let me know if there are others).

So where do we go from here?  There is no checkbox on the life insurance application for "Have you ever had a device implanted in you to shock your brain?" So what do you do?  Under Affordable Care, is this a pre-existing condition and should then be covered under their plan? I joked about it last blog but it will be a reality for many of us.  My primary care doc is fully aware and would write letters in support of the study (yes, I'll admit I have responded well, as many of you have guessed over the years).  I have a number of other inherited medical issues - DNA is a wonderful thing.  (Auto-immune - but I'll leave it at that).

So the specialists I see ALWAYS have questions. Some stay on the medically necessary track while others have been extremely interested in every facet - including how others have done, etc.  But again, if I apply for life insurance (and I'm no spring chicken) and they request the last 5 years physician's notes - there it would be....  My doc always wants to know how the device is; how the depression is; then on to whatever is ailing me.  Being on a schedule 2 drug (Ritalin) in my state, I have to see my doc every month.  Not just go pick up the script but he has to see me.  And my doc goes through the whole quick check - heart, lungs, nose, ears, ankle swelling, cough cough (which is another surgery waiting to happen) and occasionally the other men's exam.  He makes sure my insurance gets their money worth.  All good and well, but 5 years will have nearly 100 pages, counting annual blood work and referrals to the specialists.  Think I'm going to get the prime insurance rate, even if my blood pressure and cholesterol are ok?  Or are they going to re-look at my application to see if I checked that  "Have you ever had a device implanted in you to shock your brain?"

On to the next order of the day - really the real reason for posting: Another reporter has found me.  In particular she is looking for people who would have paid for the procedure, or have paid for the procedure.  I only have 1 acquaintance that I could find and she doesn't fit the rest of the criteria.  One of the criteria originally in Broaden was having had ECT.  I did not. So here is what the reporter requested:
If you did do a post on your blog to help me, I'd ask that you say I'm a journalist based in New York trying to talk to people who have tried to pay for DBS out of pocket, or people who cannot get DBS because they are too turned off by ECT.  Of course I respect all requests for anonymity - I just want to understand the atmosphere DBS has created and I think a lot of people who consider it would benefit from an article about the current state. I've reported on all kinds of complex and sensitive issues, and want to assure I am respectful and professional. ~~ kamalakelkar at gmail.com
I will probably talk to her on the phone to try and give her a better insight to REAL depression.  Please let me know if you do contact her and how your experience is.  (Was it good to talk to her or not - I don't care the details you share with her, I just don't want to be turning people to sharks.  No offense Kamala).

Again - I believe there is power in numbers - just knowing other people who have gone through what you have gone through was huge for me.  There is a closed facebook page for US.  Implanted for Depression.  E-mail me if you can't find it.  I am shocked at the lack of people in the group.  Not that it is that active, but where did the rest of us go?

I can't wait to check the "Google Analytics" to see if ANS still peeks at me.  Or are those researchers all unemployed now? 


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: http://neurocritic.blogspot.com/2015/03/update-on-broaden-trial-of-dbs-for.html

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 ClinicalTrials.gov
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....