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?"

NONE OF THAT MATTERS TO DEPRESSION.

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.

12 comments:

John Davidson said...

t is distressing when a treatment shows so much promise in open label trials but can't demonstrate significant efficacy in a double-blind clinical trial. Clinical trials are spread among multiple sites in order to ensure the treatment's efficacy is tested.
St. Jude and Medtronics invested heavily in these DBS studies, only to have them fail to demonstrate efficacy when trying to treat severely treatment-resistant depression.
Hopefully, more research will help to improve both our understanding of major depression and the development of effective methods of treatment.
In the meantime, we should be grateful that rigorous clinical trials helped to prevent scores of future patients from undergoing advanced brain surgery for an ineffective treatment.

Mark p.s.2 said...

Regarding "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 believe it was one of the stages of grief.
denial , anger , bargaining , depression , acceptance.
Anger — When the individual recognizes that denial cannot continue, Certain psychological responses of a person undergoing this phase would be: "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"; "Why would this happen?".

Robin Williams must have been overcome with despair, unlucky no one found him in time.

If they put fake DBS in patients, the patients would know nothing was turned on. I can't believe there isn't a positive effect to a safe stimulus voltage/frequency to the brain.

Anonymous said...

How do I access this private support group? Considering the timeliness of imminent [re]implantation, I am desperate to touch-base with someone "in the know," first.

Please advise.

Anonymous said...

Send me your email address. 278-005 @ live.com and I'll have the site send you an invite.

herb said...

278-005,

I don’t know if you and/or your readers got a chance to read this article. I think you’ll find it of interest as it is very encompassing.

Adverse Effects: The Perils of Deep Brain Stimulation for Depression

https://www.madinamerica.com/2015/09/adverse-effects-perils-deep-brain-stimulation-depression/

Sincerely,
Herb
vnsdepression@gmail.com
http://www.vnstherapy-herb.blogspot.com
http://www.vnstherapy.wordpress.com

Unknown said...

Am I understanding correctly that there are studies being continued? I've had MDD for 10 years and have tried everything. I just found out about dbs. I'm pretty convinced that I will continue with the pain for the rest of my life. If there IS a current trial, how might one become a part of it?

Mark p.s.2 said...

DBS is not dead yet
"A Shocking Way to Fix the Brain" October 8, 2015
http://www.technologyreview.com/featuredstory/542176/a-shocking-way-to-fix-the-brain/

Mark p.s.2 said...

I just found this video for Epilepsy https://www.youtube.com/watch?v=tmPp4HwYT0U. The DBS device has to be responsive to depressive episodes, not "ON" all the time.

Mark p.s.2 said...

To convert the Epilepsy device to reduce depression , the patient would have to report when they feel significant depression and the area in the brain located, the stimulator to detect the signal (electrical waveform) and respond.
Video of teaching the DBS device to stop epilepsy.

Anonymous said...

I have appreciated your blog as a participant in the Emory trial. I had tried a while back to get in touch with you, but was unsuccessful. I'm grateful to have had opportunity through Emory, I regret your experience of not having continued support, very scary.

278-005 said...

Anon at Emory. I apologize if I missed something. Please email me at 278-005@live.com .

Broedendbs said...

I was a patient in the BRAODEN study at the University of Michigan. I had DBS surgery in November of 2012. I was one of the people who responded well to it. I just want to say that the dbs article on the madinamerica website mentioned above is very misleading and biased. The website is written by one of those paranoid people who are against modern medicine and are just looking for dirt to expose even where there isn't any. Dr. Mayberg, a DBS pioneer, has saved many lives including my own. If anybody would like to talk about my experience I would be more than happy to.

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