Response submitted via email by Gerti Motavalli on 2025-09-04

Dear Attendees,

I hope this message finds you well.

I’d like to clarify a few important points regarding the comparison of NISE-Stim and TSN therapy, which was discussed by Susan Hastings on 9/3/2025 during the Clinical Advances in Spinal Neuromodulation Summit.

First, to clarify the name: the therapy is called NISE-Stim, short for Non-Invasive Spinal Electrical Stimulation, not “NICE-Stim” as it was mistakenly written.

It’s true that, to date, only one case report on NISE-Stim has been published. However, since developing this method in collaboration with Dr. Gad Alon in 2017, I have personally treated over 450 children with conditions such as Spina Bifida, SMA, scoliosis, and more. The results have been consistent and clinically significant.

Because of these improved outcomes, referrals now come from several top U.S. hospitals, including:

• Children’s Hospital of Philadelphia (CHOP), specifically neurosurgeon Dr. Gregory Heuer
• Lurie Children’s Hospital of Chicago, which houses the largest Spina Bifida clinic in the U.S.
• Dr. Mathew Dobbs, orthopedic surgeon at the Paley Institute, where I will be presenting NISE-Stim at the Ankle and Foot Conference in November

Physicians and surgeons at these institutions have directly observed improvements in their patients. Both CHOP and Lurie have invited me to present to their full Spina Bifida teams, and there was strong interest in future collaboration and possible research after I made my presentations.

I’ve taught NISE-Stim in many countries and have now trained more than 600 therapists worldwide. You can visit my website at spinalstim.net to explore before-and-after videos, learn more about the therapy, and view my global teaching schedule.

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I also want to commend Susan Hastings and her team on her research and extend my full support should she wish to collaborate on a research study comparing NISE-Stim and TSN. I believe we all share the same goal: achieving the best possible outcomes for our patients.

If you would like detailed clarifications on specific points mentioned about NISE-Stim therapy during Susan Hasting’s recent presentation, please read on:

Child’s Activity During Treatment

Children do not need to be actively participating during stimulation. While it's preferred if they are aligned and engaged, passive treatment is still effective.

Parameters Used

There was a misunderstanding about the stimulation parameters I use. I typically apply:

• Symmetrical biphasic waveform
• Pulse width: 100–300 microseconds
• Frequency: 20–40 Hz
• Amplitude: 15–40 mA

I have never used an amplitude of 100 mA during NISE-Stim treatment on a child, I agree with Susan Hastings, that could be unsafe.

Effects and Electrode Placement

The primary effects occur under the electrodes. Since they are placed directly over the spinal cord, we activate the sensory, motor, and autonomic nervous systems simultaneously. For children with Spina Bifida, I often place electrodes over the spinal scar to maintain suppleness and bridge the injury site.

Changes Over Time

• Muscle activation and strength significant changes can begin after 2–4 weeks.
• Sensory improvements typically emerge after 2–6 months and are long-lasting.
• Bowel and bladder function improves in 20–30% of children with Spina Bifida.
• Improved posture and respiratory function in SMA can be documented within weeks

Adverse Effects and Comfort

In over 450 children treated:

• Only two developed small blisters from worn-out electrodes, which healed quickly
• Two children with Down syndrome had allergic reactions to electrodes
• A few children needed reduced amplitude due to skin irritation​

Otherwise, NISE-Stim is well tolerated and comfortable. I have not observed any of the negative side effects reported by Susan Hastings — including increased anxiety, seizures, or worsening scoliosis.

Long-Term Benefits

I’ve seen long-term improvements in children with Spina Bifida, hypotonia, CP, and other conditions. The idea that there’s no lasting benefit does not align with my clinical experience, nor with the experience of the 600+ trained therapists worldwide.

Neuromodulation Over Time

The most dramatic changes often occur in the first 6 months of regular NISE-Stim therapy, but progress can continue for years.

Additional Clarification

Some of quotes used by Susan Hatings were taken from the WiredOn Development podcast between Mindy, Dr. Gad Alon and Gerti Motavalli were taken out of context. I encourage anyone seeking a full understanding of my approach to listen to the complete interview on the podcast itself which is available on this link: https://www.wiredondevelopment.com/single-post/spinal-stimulation-in-spina-bifida-with-gerti-motavalli-and-dr-gad-alon

Spina Bifida Organization

It’s true the Spina Bifida Association initially cautioned about NISE-Stim due to the limited published research. However, they later invited me to present at the 2023 World Conference for Spina Bifida, showing openness and interest in the therapy.

If you have further questions or would like references, including the published case report, please visit my website or feel free to contact me directly.

Thank you again for your attention and dedication to improving care for our patients.

Warm regards,

Gerti Motavalli,

PT, MPT

Developer of NISE-Stim spinalstim.net​

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Submitted by Dr VR Edgerton and Dr S Hastings 2025-08-09

Dear Gerti,

Thank you for your responses to the presentation on spinal stimulation approaches. We suggest that you bring the differences in the methods and outcomes to the Live Panel where we welcome anyone to submit questions in the Discussion for everyone to hear on September 17. That way, everyone can hear the same thing and the scientific evidence that each of us has considered to support our strategic decisions in developing the methodologies that we are testing as to its efficacy and safety. We think that the issue of muscle strength would be another point for discussion but this phenomenon could also be a topic needing some clarification, particularly on the mechanisms involved. The same is true with respect to the meaning of enabling vs inducing muscle contractions

We are accustomed to challenges by our colleagues that have similar goals, presented in detailed descriptions of methods used, results, and interpretation. Eventually, this scientific approach has led us to better outcomes, although also usually exposing new questions to pursue for better understanding of a problem. Scientific and clinical problems are normally eventually best resolved by sharing data and accepting criticism that can sharpen our findings. We see it to be normal to present data to the appropriate professional colleagues at specialized meetings for feedback. There is no need for us to be offended if we are proven wrong. The key in scientific endeavors is to find the correct answers. Those that do not adopt the normal procedures which allow their colleagues to evaluate their work are rarely successful in their work being accepted if it has not been critically assessed by experts in the field.

We want to be very clear about how you are assuring your colleagues of independent assessments of the details of your studies. As best as we can determine you have provided minimal evidence of independent assessment of your procedures and outcomes. It seems that you have made some important observations, and that you are obviously highly motivated to find pathways to greater levels of recoveries from impairments. However, we have never assumed that the credibility of our work as judged by any colleague is based on our commercial marketability, how many individuals we have taught, nor how many hospitals have adopted our strategies for recovery.​ That would be a popularity contest not a standard scientific approach.

A primary concern in your approach to your clinical work is that your depth of understanding of the basic biology of the problems that you are trying to resolve, vs the depth that appears to be unknown to you, needs to be reassessed.

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It is our perception of your presentations that you are confident that what you are teaching and practicing is correct. We have been studying spinal neuromodulation since 1975 and published the first paper on this topic in 1976. We have published almost 600 papers, many of which have been in some of the highest rated journals. Our work has been referenced in highly ranked journals 73,882 times so far yet we often use the analogy that our understanding of the biology of spinal neuromodulation today is similar to the beginning of aeronautics triggered by the first flights of the Wright in 1903, i.e., we should be guarding against the idea that we know THE best technique for spinal neuromodulation. We are not even close. We only have some combination of variables that are giving some novel results. We must be careful about the potential downsides of which we may be unaware.​

We also wish to clarify: Susan did not state that your approach does not work, as may have been inferred. It is clear from your reports and those of your collaborators that muscle strength can improve in children undergoing your protocol. We understand that you are strengthening, turning up the stimulation to obtain a 4/5 contraction to do so. Strengthening through stimulation is in step with many orthopedic approaches. Our primary goal, by contrast, is to excite the nervous system in order to enable more typical movement patterns, targeting neuromodulation at the level of the spinal cord-brain communication. The clinical implications of this distinction are significant. The issue of long-term maintenance after discontinuation of treatment remains an important debate in the field. Dr. Gad Alon also referenced this in your podcast. If your experience or data suggest otherwise, we would genuinely welcome the opportunity to review your reasoning and results.

Regarding the chart Susan shared in the presentation, data was drawn from multiple sources, including parents who have had children using NISE and Susan’s own notes from taking your online course. We encourage you to create your own detailed comparison of the two approaches for clarity, which would be valuable, not only for us, but for the wider scientific community.

You seem to be most concerned about the parameters presented. We believe you have referenced Sayenko’s work from 2015. Sayenko’s paper is encouraging but the relevance of your response to its significance to the apparent issue is not immediately obvious. You also have referenced the Russian study on CP (Solopolov 2018 ) to develop your protocols for stimulating the Spinal Cord. Dr Edgerton is a co-author on both of these. Dr Gerasimenko, Dr Edgerton and former postdocs such as Dr Sayenko have published many variations of stimulation parameters since the spinal stimulation methodology was developed over a decade ago. These papers should be readily available to you to become aware of the variety of stimulation parameters that have been studied. If you have additional published studies employing your method, we would appreciate you sharing them for a more comprehensive understanding.