Thursday, November 21, 2019

Comments by Danielle Egan

Showing 6 of 6 comments.

  • Thanks Markps2. Very disturbing information and there’s so little info about what happened, whether they were under the constant care of a neurologist at the time, whether that neurologist had recently changed their settings, how they got access to a gun, etc, etc.

    Even worse, the original 2016 PR story about the surgery they were given in 2015, published in the hospital’s magazine, titled Create: http://cdn2.hubspot.net/hubfs/276703/Denver_DBS_Center_OCD_Article.pdf?t=1460067947382

    The PR story makes no mention of where the device was implanted in their brains. And this part: “…Adapting the Mazor Robotics Renaissance Guidance System, a system commonly used for spine surgery, [Dr. David] VanSickle [of Littleton Adventist Hospital] is one of the first surgeouns in the world to perform robot-assisted Asleep DBS surgery, and now performs more of these than any other surgeon in the world. ‘With the robot, we gain higher levels of precision,’ he says. ‘And the more accurately we put hte electrodes in teh first time, the better… outcomes were always good, but the procdure has become more consistent, faster, much less expensive – more mundane really. Yet it’s highly underutilized as a therapy…’

    The neurosurgeon’s cavalier comment brings up another important ethical issue: can a robot surgeon be held legally responsible for a botched surgery?

  • A few updates….

    I highly recommend the work of author and investigative journalist Jeanne Lenzer. She was recently interviewed about DBS on NPR’s Fresh Air. Transcript here. https://www.npr.org/2018/01/17/578562873/are-implanted-medical-devices-creating-a-danger-within-us

    The editor of Neurotech Reports, an industry neurotechnology news and information website, recently wrote an editorial critiquing my MIA articles: http://www.neurotechreports.com/pages/publishersletterJan18.html

    He also critiqued my piece, and the work of Jeanne Lenzer, in a recent op-ed on Medium, a publishing blog: https://medium.com/@neurotechwriter/defending-dbs-7ad17113d46c

    He made a number of claims and comments about my articles that were inaccurate and misrepresentative, particularly in his MEDIUM piece, including that I provided inaccurate data from the trial results. Hmmm, I thought it was the job of the study authors to provide accurate data and hypotheses? And he provided no data to support these claims. Any thoughts about his editorials?

    Jim’s wife sent me his medical records. So far, I haven’t had to the heart to crack open that box.

  • Thanks for all the comments. Bramble, the University of Dundee participated in the study. http://discovery.dundee.ac.uk/portal/en/research/subcallosal-cingulate-deep-brain-stimulation-for-treatmentresistant-depression(bc314c75-a986-4f58-99a6-958938e32b6b).html

    And that centre has a long history of use of psychiatric neurosurgeries.

    Radiohead, I’m so sorry to hear about your mom. Her post-op side effects sound much like the effects of psychosurgeries, which are still done at many of the same centres that conducted the DBS study: https://danielleegan.files.wordpress.com/2015/09/psychosurgeries_thismag.pdf

  • Hi Truth,

    I’m not sure what caused Vicky’s death. I was unable to keep in touch with Vicky after the article was published, because her parents were very upset about it. They were upset with her for saying negative things about the surgeries, and they were upset that I published information from people that were critical of the surgery. So, I kept in touch with her psychiatrist and periodically emailed him. About two years after I wrote about Vicky, I emailed to check in and he said that she had died, but that he couldn’t remember whether she had died by suicide, or from some other cause.

    Regarding other comments:
    – People with bipolar disorder have been among the recipients of experimental DBS.
    – I have not researched the specific game mentioned, but games can be very effective with various diseases and disorders, including video games and other games for PTSD, chronic pain (including from body burns, which I’ve heard are some of the most severe types of pain), methods to curb Alzheimer’s, methods to curb anxiety, methods to help with autism and Asberger’s. Games are key to various neuroplasticity-focused therapies, which are used for everything from stroke recovery to phantom limb syndrome to addiction. They certainly aren’t magic cures, but with continued use, games can improve cognitive and neurological function, much like physical rehab therapies can help people gain back lost function, whether it’s learning to walk, button a coat, or other cognitive functions. In fact, games are part of that critical rehab. But, yes, in many cases, they have to be ‘played’ repeatedly, for weeks, months and perhaps years.

    I can’t imagine how tough the process of recovery must be for anyone facing any difficult and painful situation. I consider myself very lucky that I haven’t had to climb that kind of mountain at the very same time that I was at my weakest and most vulnerable. That’s one of the many reasons I find Rich, Jim and Steve’s stories incredibly hopeful and inspiring.

  • Thanks to all of you for commenting. markps2, you mentioned a person who had a cingulotomy, and I wanted to point out that I have written about these psychiatric neurosurgeries as well. As I mentioned in this article, the rationale and choice of DBS brain targets was based on these psychiatric neurosurgeries. Many of the early adapters to DBS were performing these surgeries and looking for a “reversible” method of psychosurgery. These surgeries may be marketed as precision targeting, but they target brain regions in exactly the same way as they do with DBS, with all the same challenges. And typically, it doesn’t work and individuals are given additional surgeries, which destroys more brain tissue. If you’re interested in reading more about that subject, I’ve written many articles on psychosurgeries: https://danielleegan.wordpress.com/5-2/neuroscience/
    I recommend starting with the article “Vicky’s Brain.” It’s a short article, but I’d like as many people as possible to bear witness to Vicky’s life. She died at the age of 22, and so she can no longer speak out against this surgery.