Wednesday, January 17, 2018

VNS: Very Nerve-Wracking Shit or Virtually No Science*





Blind belief in authority is the greatest enemy of truth.

Albert Einstein



Back in the dark days of the last century -- let's say, 1999.

Sophie attended a wonderful preschool over at UCLA. There were two kids in her class who also suffered from refractory seizures. The two kids were just a couple of years older than Sophie, and their mamas were rocking brave and powerful. When they heard about a new medical implant device called the Vagal Nerve Stimulator, or VNS, they researched it and talked to their neurologists about it and ended up flying to Ohio, I recall, where the company that had created the device, Cyberonics, was implanting it. I remember that not many children had gotten the device yet, but it looked promising, and we in the Refractory Epilepsy World were  quite used to having treatments thrown at us that were, if not experimental, than approved for use in adults or whose mechanism of action is unknown. I'm only telling you this part because I want you to know how long I've known about the VNS -- since its earliest use, even -- and how this whole thing that we call the treatment of refractory epilepsy works.

We are strong and brave and desperate people.

I learned over the years that while the VNS could be helpful, the efficacy rate wasn't that great (the usual 33% noting "improvement" statistic) and, combined with the possible side effects, I never felt any compelling reason to try it on Sophie. I think I was quite sick of the whole shebang by the time it came around, but not quite at the point where I vowed to never try a new drug unless Jesus Christ offered it to me.  I never had a good feeling about the device, never really spoke to anyone who had gotten it (and I knew A LOT of people who got it) and was glad to have done so. I was probably also overwhelmed and lazy about it, too. I heard some horror stories, but there are horror stories for literally every single epilepsy treatment, including the ketogenic diet (which was a horror story for us, too).

Oh, wait.

There is one epilepsy treatment that I've never heard a horror story about, and that's cannabis, but that's another post.

Not a single neurology appointment passed without mention of the VNS. I'm dead serious. I laughed off or declined the VNS suggestion every single time it was trundled out by both beloved and barely tolerated neurologists over the twenty or so years that device had been around. Most recently, I learned that Sophie's old neurologist, whom I used to call The Neurologist before I fired her, has been paid by the company that manufactures the VNS which was an explanation, I guess, for why she suggested it in every single appointment we had with her. Honestly, if you go over to the right side bar and search for the VNS, it'll come up numerous times as part of my conversation with The Neurologist.

These folks are throwing darts.

Try this.

Try this.

Try this.

Where am I headed?

I was also going to tell you about my oft-irrational but actually hard-won and some would say earned distrust of the Medical Industry (emphasis on the word industry, so don't jump in here with your exclamations of all the good and wonderful caregivers in the medical world), particularly when it comes to the authority of the CDC, the almighty FDA and other Powers That Be. I had a bit of a tiff over on Facebook (like a fly to shit) about the flu vaccine. I object to the mainstream media pushing vaccination policy as a morality play. You know what I'm talking about, and I'm not going to belabor it here. Some woman with whom I was engaged in this ridiculous Facebook discussion finally had the last word with a patronizing Okey Dokey, and I let it go. Because, you know, Science is infallible and The Powers That Be are to be trusted, and if you don't you're anti-science and a crazy person.

Wait. Where was I headed? I'm off track.

So, this is where I was headed:

Are Implanted Medical Devices Creating 'A Danger Within Us'?

If you can't listen to the whole segment, read or at least skim the transcript because it's mind-blowing.

Especially the VNS and epilepsy part.











* or the Vagal Nerve Stimulator




18 comments:

  1. I love reading your blog. I cringe over the fact that I posted that article and wish I hadn't. That said, your steady and thoughtful discourse expands my knowledge amd deepens my thinking but then I worry amd ask myself "at what cost" to you dear Elizabeth. Apologies.

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    1. It’s ALWAYS good to freely and safely discuss controversial subjects— thanks for providing the space!

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  2. An icecube on the back of the neck stimulates the Vagal Nerve. And *icecube*. But they have to have an implant...

    The Flu shot is 10% effective this year.

    https://www.ncbi.nlm.nih.gov/m/pubmed/22156085/

    https://mobile.nytimes.com/blogs/well/2012/11/05/reassessing-flu-shots-as-the-season-draws-near/?referer=http%3A%2F%2Fm.facebook.com

    This one may be a bit ranty and unfounded but the Peter Doshi report might be interesting https://jonrappoport.wordpress.com/2018/01/15/massive-flu-outbreak-heres-the-real-story-the-media-wont-touch-the-lies-the-hoax-the-scandal/

    I wish we still had reporting like this https://www.youtube.com/watch?v=8elE7Ct1jWw

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    1. And this! http://www.newsweek.com/2014/11/21/medical-science-has-data-problem-284066.html

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  3. I've heard two interviews with that woman now and they were both horrifying. I am so glad you decided not to go that route with Sophie but think of all the people you have. And as you know- it's not just the VNS.
    Practically NO regulation in the implant field.
    Who knew?
    That IS the question.
    Who knew?

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  4. That was a very interesting read...but sadly not a surprising one. The conundrum of what is worse the ailment or the cure. My dad had a hip replacement in his early 80s. HUGE mistake. He seemed to recover just fine but he was never the same. Something about him was just off and his health declined rapidly from that point on. A HUGE medical SNAFU followed and that hastened his decline. BUT we'll never know...

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  5. Industry is a very appropriate word choice. Sadly.

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  6. I hate that this all speaks so heavily to our culture of class as well. Those people who have the wherewithal to investigate alternatives, ask hard questions and stand up for themselves and their children/parents/partners in the face of the white coats are so much more likely to have good outcomes. Folks who accept what the doctors have to say because they don't have the time or money or education to question it will end up being the guinea pigs for medicine. And that's not to say that they're the only ones, because there are some folks who are educated and have means who still blindly adhere to what their doctors say, but the fact that it's nearly impossible for folks living in poverty to do that is sad to me. We have truly let capitalism fuck up our priorities.

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  7. The VNS has been life changing for my son. He was having at least one life threatening event per week, to zero in the last 18+ months. We have gone from 4 AEDs to 1. His quality of life has skyrocketed (ie not as doped up all the time) Still having complex partials.
    We are also using CBD. Not in a MM state. I believe we could kick these too if I had some options to try THC or THCA.
    Elizabeth, found your blog many moons ago as a new IS mom. IS resolved with ACTH but still walking the walk 10 years later.

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    1. Thanks, Anonymous for your comment — and how thrilling that your son has found such relief from seizures with the VNS! I think you should figure out a way to get THC or THCA and try it.

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  8. Your instincts were so right about the VNS and Sophie.

    Thank you for the link to Jeanne Lenzer and the dangers of implanted medical devices. I am one who had a Dalkon Shield IUD implanted in 1971. I had it removed after a few months because of intermittent severe stabbing pain that would cause me to double over. A Dalkon Shield was not easy to remove. I wonder what permanent damage the removal process caused me. The Dalkon Shield was found to cause severe injury to a disproportionately large percentage of its users. That is clearly an example of a device that was allowed to be marketed before it was proven safe.

    I'm sad to say that I am not at all surprised about what goes on behind the scenes in the medical industry in regard to implanted medical devices. Although I am no longer working as a medical transcription editor, during my 22 years I began to observe disturbing patterns as a result of medical interventions in the thousands of medical records I transcribed.

    Jeanne Lenzer's research corroborates what I noticed as I transcribed medical records -- that too many patients were suffering and dying from the effects of medical treatments. A patient would be prescribed a medication which would cause side effects. Then another medication would be prescribed for the side effects until some patients were taking up to 20 medications a day and still suffering.

    Light is being shed on so many dark places in our world. It can be overwhelming to see how vulnerable we all are in an aspect of our lives that we once felt we could trust. That is where gut feelings and alternative medical approaches come in handy. I was certainly naive before working as a medical transcription editor.

    There is a vast difference between the science that serves us and that so-called science that has a profit motive and lacks conscience. Jeanne Lenzer clearly acknowledges that. I am grateful for the research and perseverance that led to her book.

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  9. I have followed your blog for many years and have learned much from you. This VNS things scares me so much. My son had the VNS implanted in 2009 - he is now 13 years old. He has severe brain injury and is much like an infant. We do think the VNS has helped him - however he cannot express if it were to have a bad side effect. This makes me sick .. the thought that if it does cause him pain etc... he can't tell me. But info is power and I will keep this in mind and if I see anything wrong I will know to investigate it. Thank you for the info.

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    1. Thanks so much for your support and kind words. I hope your son continues to get help from the VNS and has no side effects. The whole thing is so difficult — but we keep at it, right?

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  10. I am humbled by your strength, bravery and desperation. I learn so much from you. I'm told again and again that I need a hip replacement and probably also two new knees, but I'm not rushing to have it. I don't know. If I can move under my own steam, maybe I'll just keep limping along.

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  11. Anonymous~ Celebrating the seizure freedom and improvement your son has had! I know for some the VNS brings improvement, the article states this too. However, I would be interested in knowing when the CBD and weaning of AEDs happened? Wondering it the decrease in seizures could be attributed to those two things alone or in combo. Did VNS stop the seizures before adding CBD and weaning AEDs?

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    1. He got the VNS in March 2014. Started CBD in August of 2014. It took us months of adjustment to VNS to reach therapeutic level, but we did see some improvement before starting CBD. I do think his improvement is a combo of the two. The AEDs were weaned extremely slowly. It look over 6 months to wean off of Trileptal, the last to go after Zonegran and Keppra. My son has CP and autism as well. The CBD has helped his spasticity and behaviors as well.

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  12. Anonymous~ I'm happy for you and thrilled that he's experienced huge improvements. From your timeline, it seems like much could be attributed to addition of CBD and/or weaning of AEDs. Always a puzzle trying to tease out exactly what is what when there are so many variables, right. VNS stimulation could certainly have been life changing but I'd say it's likely the combo of all the above have been life changing for your son. As, Elizabeth said, hope you get a chance to try THC or THCa and try to stop those complex partials too. Wonderful that the IS resolved with treatment too. You aren't alone in still walking the walk years later. Thank you for answering my question about timing.

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  13. I agree. About all of it. Just thought you should know.

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