3 weeks ago
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Last year I wrote a post entitled “When Abby died.” It relayed how my unlucky friend Paul’s daughter was the “one” of the estimated 4,500 children stricken with a fatal epileptic seizure, now almost 11 years ago.
Knowing as little as I do about the disease, I asked the group, “Who in our Medical Devices Group community is working on epilepsy devices (or knows someone who is) and can comment on progress we’re making?”
Dermot Walsh wrote, “My daughter had epilepsy after a stroke as a toddler.” They performed a hemisoherectomy and partial disconnect. He says, it “completely cured the epilepsy and she has been seizure free for over 20 years.”
I had to look up “hemispherectomy,” a “very rare neurosurgical procedure in which a cerebral hemisphere (half of the brain) is removed, disconnected, or disabled.”
Teresa Prego is a former Medtech Surgical/Zimmer Biomet Robotics (ROSA for neurosurgery) employee and a parent of a 23-year old with intractable epilepsy. Teresa says, her daughter used ROSA for a stereo-electro-encephalography (yes, I had to look that up also) to map seizure origins and determine if an RNS might work. It was minimally invasive, which was made the surgery something her daughter would consider.
Bill’s niece is three-years old. She had an ablation at the Epilepsy Center at Texas Children’s Hospital. He anonymously shared,
Last year, Joe Moore wrote in, “Our 31-year-old son is on his 3rd vagus nerve stimulator (VNS) from LivaNova (formally Cyberonics). It’s been a game-changer for his quality of life (and ours)! Yesterday he shared,
Bob explains medical and engineering evidence suggests epileptic seizures can be detected (even predicted) using EEG sensor data, but the data generally comes from complex arrays of wet electrodes, impractical for wearing during the day, adding,
Bob welcomes your input and connections.
Thanks to everyone who gave us an update. There’s more at the original article, “When Abby died,” and I encourage your further comments here.
Let’s talk about next year’s 10x Medical Device Conference
For this week’s clip, a tense scene from The Social Network, shown at our 2016 event.
Thank you for being part of our Medical Devices Group community!
Make it a great week.
P.S. Please this post if your customers would value it.
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Please also look at there Neuropace RNS. https://www.neuropace.com
I understand that there have been good clinical outcomes with the device and there was even a new story about it on the Boston local news: https://www.boston25news.com/news/implant-device-decreasing-frequency-of-seizures-in-mgh-patients/551720127
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An Israeli company developed a non-invasive treatment for Parkinson's tremor.
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Back in the mid-90s, I was lucky enough to be one of eight employees at a startup in Redmond called FRESA Biomedical, headed by a fellow of the Cleveland Clinic. We developed and executed assays (enzymatic, chemical and mineral) to determine blood levels of physiologic predictors of response (levels of free-radical scavengers) to epileptic seizure drugs. Some of those drugs (valproic acid, in particular) had a high rate of extreme adverse events (liver failure). We developed profiles that were able to accurately predict which patients were most or even somewhat “at risk” for these outcomes and recommend a therapeutic intervention prior to drug administration. We worked with the biggest pediatric epilepsy centers around the nation. That intervention was nutritional, therefore not terribly lucrative for potential investors. We didn't make it, but the science did. Think: neurologic oxidative stress.
Why am I describing all of this? Because I am a big believer in cross-disciplinary problem solving. I fervently hope that those folks pioneering devices for epilepsy monitoring or interventional solutions are in communication and collaboration with those on the drug and nutrition therapeutics side. There are recent advances in genomic variant data (that is resulting in variant reclassification for a significant percentage of patients). There is very promising research in cannabidiol related to Dravet and Lennox Gastaut-type seizures (the Brits are ahead of us on this; with draft physician guidance, while we are squabbling over 'positions'). Both the US and UK epilepsy societies describe a highly-structured ketogenic diet (anti-inflammatory, anti-oxidant pathways and mitochondrial health) as being a good adjunct. There are some related drugs (tripterene celastrol and edaravone) showing a lot of promise. Both the societies have great websites, by the way. I find that the Johns Hopkins Epilepsy Center website is an excellent resource for patients and families.
Sometimes “it takes a village.” For confounding and devastating conditions such as epilepsy, that seems to be the rule rather than the exception. I hope that the researchers here are involved with the epilepsy societies, that they are collaborating and communicating with researchers and entrepreneurs in the other disciplines. My connections are no longer fresh, but I would be happy to
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