Spinal Cord Stimulation

[rick-slent]

Here is a synopsis of the study: https://www.upmcphysicianresources.com/news/020525-spinal-nerve-stimulation

upmcphysicianresources.com

Spinal Cord Stimulation Restores Neural Function | UPMC Physician Resources

A new drug-free, minimally invasive intervention targets the root cause of progressive loss of neural function in SMA, an inherited neuromuscular disease.

[alyssa-silva]

Wow, this is really interesting. I haven’t heard of this before, but anything that’s noninvasive catches my attention. Hopefully, researchers continue to explore this further. I’d be interested to know how this treatment would impact weaker SMA types, if at all. Do you know how this study is going to proceed now that they have their findings?

[rick-slent]

Yes, it is exciting. It looks like they are recruiting for a trial now for non-ambulatory folks with the focus on upper limbs!

[jarodc]

Dr Capogrosso is awesome! Very exciting results from this trial. A lot of e-stim / neuromodulation work through the years stemmed from Dr Edgerton’s lab at UCLA, and I recently interviewed him on my podcast. https://neuronregeneration.com/4

He has developed a transcutaneous spinal e-stim approach that is getting great results (eventhough it’s not internally placed). We’re trying to get a case study using it on my 7 year old twins (with Type 1) here in Austin. https://spinex.co/our-technology/scip/ > currently in trials for Cerebral Palsy.

neuronregeneration.com

Dr. Reggie Edgerton - Neuromodulation for Spinal Cord Injury, Cerebral Palsy, Parkinsons, and more - Neuron Regeneration %

Explore Dr. Reggie Edgerton's pioneering work in neuromodulation for spinal cord injury recovery and neurodegenerative disease treatment on this episode of the Neuron Regeneration Podcast.

[alyssa-silva]

I hope you can enroll your twins in a trial. Are they receiving any other treatment now? E-stim sounds like it would be great to pair with one of the treatments already available.

[beebarbie64]

Hi, here Barbara Heetman from Amsterdam, The Netherlands. Id been very recently become a member here, but im reading the articles in SMANewsToday for some years already. I have SMA 3a, i had my first symptoms before i was 3 yo and walked (in some way;) until my thirties. Now im 60 yo. Rick, where can i find the videos you mention? I scrolled the article and even bought the Pdf, but i must be overlooking something..

I should still study better the article, but i was quite overwhelmed by what i think i read! When disease modifying treatments for SMA were not even thinked of, me and other people around me always thought: there should just be made a chip or some electronic device between the nerves in the spinal cord and the skeletal muscles to take over the weak or non-existant signal/impulse so that the muscles would develop and even grow instead of atrophying. This seemed like a simple solution:)) And as i said, i should still study the article better, but is this what is happening now?

Nursineren (Spinraza) did nothing to me, i only got very severely overloaded (thus painful and strengthless) muscles in shoulders/arms by doing the baseline measurement in the endurance exercise with way too much enthusiasm and adrenaline as I was pushed to go as far as I could. I did the exercise countless times, while hyperventilating, i was completely beside myself. I regret that day so much! 8 months later i didnt have the strength anymore to do the exercise even only one time. Sorry to go into this in detail, but the continuous pain and sudden loss of strength in what used to be my strongest arm confront me everyday with it. The 1,5 year with Spinrazainjections didnt make it better at all.

But the treatment mentioned in this article makes me think: would this help maybe, even at my age? At least it intrigues me because, as i said already, it seems to me like its that first idea i had, 40-45 years ago, to ‘simply’ help SMA-muscles to increase instead of decrease. So, this was my long reaction to the article. Thank you for posting it!! Its clear that i didnt hear from it before and i like to know better what it means, including the inspiring videos that you mention, but which i couldnt find yet.. Kind regards, Barbara

[rick-slent]

Hi Barbara,

I have been on Spinraza for the past 5 years and also haven’t had much success. The videos are at the very very bottom past all the references and stuff on the first article I posted. They are labeled as supplemental videos.

[beebarbie64]

Hi Rick, i found the 6 videos, its u n b e l i e v a b l e! Thank you again