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Brandy Ellis
9,242 followers -
I'm a Cyborg. Yes, really.
I'm a Cyborg. Yes, really.

9,242 followers
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Cyborg AMA

I am creating one post where I can keep track of all the questions I'm asked. If the answers to your questions aren't here, ask!

What is that picture? (below)
The photo is my after image when I had the Deep Brain Stimulation (DBS) electrodes implanted in my brain. Yes, you can see my dental work. As much as I wanted to photoshop that out, I restrained myself.

What am I looking at?
They drilled two holes in the top of my skull, and placed electrodes into Brodmann Area 25 of the subgenual cingulate in my frontal lobe. The wires are run under the scalp and connected to an extension wire above my right ear. The extension wire runs under the skin and connects to an Implantable Pulse Generator (IPG), very similar to a heart pacemaker battery, that is implanted underneath my chest wall.

How did you get this brain implant?
I am part of a clinical research trial studying the safety and efficacy of DBS for patients with treatment-resistant depression at Emory University in Atlanta, GA.

Are there things that you can't do anymore, like use microwave ovens?
This is a new device, so the earlier issues with interference have been corrected. Magnets are still a potential problem. No Bucky Balls for me to play with! I have a card that allows me to bypass metal detectors and security wands in exchange for being patted down by hand. I can go through the TSA body scanners with no problems at all, since the entire device is subdermal. However, if the scanners are down, then I basically have to let the TSA get to 3rd base in the middle of the airport.

How long are you in the research trial for?
It took approximately six months to get into the trial. I moved to the Emory University area a month before the surgery to have baseline testing and pre-operative appointments completed. A month after the surgery, the device was turned on. I had at least four appointments every week for six months after the device was turned on. I continued regular follow up with decreasing frequency for another six months. After one year of stimulation I was able to move away from the University area. However, I will need to be seen in person at the University every six months, for at least another nine years or until the device is FDA approved. Battery changes are in addition to this schedule. The general expectation is that for as long as this implant is in my body, the researchers want to follow me.

Are you getting paid for this?
I am not compensated. They provide the experimental portions of the trial at no cost, and validate my parking for most visits. My private insurance is covering most of the other medical expenses, including the actual surgery. All living expenses in the University area, insurance co-pays, deductibles, and arrangements for follow up visits are be paid out of pocket by me.

What happens when you need a new battery?
I will need to have the battery pack replaced on a regular basis to maintain the effect. The original battery model lasted approximately 13 months for me. My current battery model is rechargeable and is expected to last 10 years. I recharge it almost every night for about 45 minutes. My private insurance has covered all battery replacements. It is a relatively simple procedure. They open my chest, swap out the battery, and test the connections. Barring device failure, or broken wire, they will not need to go into my skull or brain again.

Can you change your settings?
I have a remote control (yeah, it's just cool to say that) that enables me to turn the device on and off. If contact with a magnet accidentally turns the device off, I can turn it back on. If I need an ECG, EEG, or other medical test, I can temporarily turn the device off. The remote also checks the battery status so that I have plenty of notice for a battery change.

My remote does not allow me to change the stimulation settings. The reasons to not change settings are twofold. First, the current settings are working exceptionally well for me. Second, programming changes take weeks to show results, much like the effect of antidepressant medications. The area of the brain being targeted is an overactive depression area, so increased stimulation would not have an "upper" type response.

Can you feel it?
I can touch my scalp and feel the wires running underneath the skin. I can touch my chest and feel the battery pack. But I can't feel the stimulation at all.

How did you get in this study?
I found it through ClinicalTrials.gov. I strongly recommend people consider clinical trials as part of their health care options. I think clinical trials will be how we solve most of our health issues.

I went through several interviews, my medical records were all reviewed, and there was a very comprehensive screening process to make sure I was an appropriate candidate for the trial.

Is there a placebo for this trial?
My trial did not include any blind or placebo component because it was just for safety and efficacy, not FDA approval. There is another study currently going for FDA approval, and it includes a single-blind period. Everyone gets turned on eventually, but there is a (six-month?) period where some are on and some are not. 

Why did you do this?
Depression is insidious, until it is overwhelming, and then it is devastating. It takes that level of pain to think this is a good idea. As far as I was concerned, I had nothing to lose. I had a catastrophic unipolar depressive episode that lasted years. All other treatments had failed to help me. I realized there is almost no data on what works in people that don't respond to the first-line treatments. About 30% of patients don't respond, not to different medications, not to different types of therapy, not to lifestyle changes, not to ECT or hospitalization. So while the majority of people do respond, given the quantity of people with depression, that leaves a huge gap.

I chose to join this study even though I didn't think there was even a chance that I would get better. I wanted to help the people who come after me, even if it didn't work. Being a data point (or thousands data points, according to the doctors) gave me a reason to continue trying to find something that would work, after everything else failed. Because experiments can be successful even if the hypothesis is wrong. Most of the time, even if something works in the brain, scientists still don't know why. I am looking to the medical and scientific community for help & answers, and they are looking to me for data.

How many people are doing this?
I am one of only a few dozen people in my experiment. My limited information indicates that less than 100k people have neuromodulators for various conditions or experiments. It's most common use is for FDA approved treatment of the symptoms of Parkinson's Disease. 

Why do you post publicly about something so sensitive?
I'm sharing this because scientific experimentation is important. Researchers worked for decades, and a LOT of mice and other living things died, to get to this point. I appreciate their sacrifice, and I feel that I should acknowledge their contribution. If I was in the first dozen people to get a heart pacemaker, and it was successful, I would talk publicly about my experience. I refuse to believe that because this implant is for my brain that I should hide it.

This has been an amazing and unique experience. I want people to know that there is help available, perseverance is possible. My depressive episode nearly killed me, and I felt alone, ashamed, and overwhelmed. I want to do whatever I can to prevent other people from going through the same experience.

Does it work?
It has worked for me. I reached remission, with only mild depressive symptoms, at six months of stimulation. At 18 months, I had zero symptoms of depression.  I have maintained remission since then and am currently considered euthymic (mood appropriate).

I want to stress that my depression is managed. I am not "cured." I continue with therapy and medication in addition to the DBS, along with other lifestyle modifications to ensure my coping skills are not overwhelmed again. 

How does it work?
My totally unofficial, completely personal, unscientific opinion is that the part of my brain that was overactive made it impossible for other treatment to work, medications, therapy, ECT, anything. By increasing the inhibition of this area, the overwhelming depression mode was reduced. The implant was necessary, but not sufficient for me to recover. It made it possible for all of the other treatments, multiple kinds of therapy, multiple medications, multiple lifestyle changes, to actually have some benefit. And when I could see that benefit, it generated enough momentum for me to continue doing the work. It took every single thing I was doing for treatment to help me get into remission, not just this implant. The implant made it possible. But if I hadn't done anything else except get this implant, I don't think I would be better right now.

It is worth pointing out that part of my purpose in this study is to be a long-term data point. But most of the focus is on the safety and efficacy of the procedure itself. Why does this work for me, but not someone else? Why didn't anything else work for me? Is there a way to determine in advance if someone will respond, and how well? I think they will need far more participants over a far longer period of time before there is an understanding of the resulting changes in the brain.

Will the stimulation strengthen other neural pathways to a point that some day you will not need this anymore?
They don't anticipate that I will ever be "cured" by the device. Based on my conversations with the various doctors, the neuralplasticity will impact my resiliency, in the cognitive-behavioral sense. I essentially get to act like a non-depressed human long enough that it becomes the default again. I might build up enough coping skills to be able to handle the depression on my own. For right now, my hope is that this will offset the likelihood that eventually something might go wrong and I will need to have the device removed. 

Have you experienced any negative effects or device problems?
Thankfully, no. All of the scars healed fine. After a new battery was installed each time, my shoulder was sore for a while, but quite tolerable. I haven't experienced any side negative effects from the DBS.

How are you doing?
As of my third anniversary (11/11/2014) I am doing great! I am able to work full-time again. I am not depressed at all. I function like a healthy individual. I am what is termed euthymic which basically means I have an appropriate mood for the situation. I can experience joy when good things happen. I can experience sadness when bad things happen. I laugh, I cry. I am just no longer overwhelmed by my emotions.


Where can I get more information?
If there is something you would like to know about my experience, please ask.

I was interviewed by +Te-Erika Patterson for the Huffington Post, and that article can be read online at: http://goo.gl/9oyfSf

I was interviewed by the BBC4 for the DIgital Human program in November 2012, and can be listened to online at: http://goo.gl/6VBBb

I was interviewed by the BBC4 for a different program, Deep Down Inside in August 2013, and that can be heard online at:  http://goo.gl/g9xD0q 

I was featured in a documentary for PBS, Ride the Tiger which aired in April 2016. Depending on your local PBS station, you may be able to watch the entire documentary online, or this clip: http://goo.gl/81bOcL

When I post about the trial I try to use the hashtag #DBS4TRD  so you can always search those posts.

Information about my program at Emory is available at
http://goo.gl/DBpYcR and http://goo.gl/xFAhc1
The page at ClinicalTrials.gov is http://goo.gl/yGToD

For more information about DBS for TRD:
http://goo.gl/d8EY2
For more information about DBS in general:
http://goo.gl/7eIKe5
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