It’s long been said that the devil is in the details. But sometimes, it’s the lack of details that proves to be devilish.
At the recent 2022 ICORD research meeting in Vancouver, one of the poster presentations that caught our eye was titled Getting lost in the sauce: A scoping review of publicly accessible web-based information on spinal cord stimulation. It made a convincing case that many websites offering information about neurostimulation aren’t exactly being forthcoming when it comes to the potential pitfalls.
Neurostimulation (which is also known as neuromodulation, spinal cord stimulation, or SCS) is showing tremendous promise as a therapy to improve functional impairments associated with chronic disease and disability, including SCI. And while we’re far from seeing widespread and approved use of different forms of neurostimulation as a treatment in SCI, its promise is resulting in growing demand for information about it, not to mention growing public demand for the procedure itself.
The problem, says Dr. Tiev Miller, a postdoctoral fellow in Dr. Andrei Krassioukov’s Autonomic Research Laboratory at ICORD and author of the poster, is that many online sources of information about neurostimulation are downplaying the risks involved—particularly with epidural spinal cord stimulation, which requires invasive surgery to implant electrodes directly on the spinal cord.
“This review was conceived and initiated by Dr. Krassioukov and Dr. Rahul Sachdeva, who is a Research Associate in our lab, as a way of understanding what kind of information the general public is being exposed to with regard to the current use and application of spinal cord stimulation—transcutaneous, epidural, magnetic or others,” explains Miller. “Ali Hosseinzadeh, a student at UBC, and I have been trying to extract and synthesize this information to see how comprehensive or fundamentally lacking it is overall. We’re also trying to get an accurate appraisal of overall information quality—for example, whether or not the information is evidence-based—and find out what kinds of clinics, organizations, institutions and/or groups/individuals are authoring sites with SCS-related content.”
The duo started the review by using Google Trends to identify the top search queries used world-wide in the last ten years. It turned out that “spinal stimulator” was identified as the top search term. Miller and Hosseinzadeh then used that term in the four most widely-used search engines (Google, Baidu, Yahoo, and Bing). This resulted in identification of 46 unique primary sites. Five were scientific resources, eight were nonprofit sites, 17 were for-profit sites, three were news/media sites, and three were independent/blog sites, and ten were peer-reviewed journal articles. As well, 55 linked sites with additional resources were also identified. Note that the majority of these websites provided information on the use of neurostimulation for chronic pain resulting from a number of different conditions and diseases; there were few sites specific to SCI.
What types of problems has the review discovered?
Dr. Tiev Miller says that, on the surface, there’s nothing blatantly or overtly wrong with any of the sites he and his colleagues encountered in their online search and review.
“It’s when we scratch a bit deeper that we see more of a subtle omission of critical information or the provision of potentially misleading information regarding the harms and hazards of these procedures,” explains Miller, who provided us with a couple of examples to illustrate his concerns.
The first is nuraclinics.com. “This is a private clinic in St. Paul, Minnesota which offers ESCS and other implantation procedures, mostly for treating chronic pain,” says Miller. “At the beginning of the neurostimulation page, implantation of the epidural stimulator is described as being similar to a cardiac pacemaker, which is misleading. The stimulation parameters and the target organs/tissues involved are very different. The aims and outcomes of these treatments are also different. If you look at the ‘End of Procedure’ section on this page, the last line states that ‘After surgery, patients may experience mild discomfort and swelling at the incision sites for several days.’ Here, the site authors are providing a mild post-surgical scenario while omitting all others—for example, bleeding, clotting, infection, dural puncture, spinal cord trauma, and others. The healing time is also vague: ‘Wound healing may take up to several weeks or longer in some cases.’ If this was meant to serve as a disclaimer, it should be more comprehensive. My intuition is that the authors don’t want to deter potential clientele.”
A second example is, surprisingly, a site hosted by a major US university—the University of Pittsburg’s Department of Neurosurgery (upmc.com/services/neurosurgery/ spine/treatment/pain-management/stimulation). “This is another example of a site with vague or over-generalized descriptions regarding post-surgical considerations,” says Miller. “What’s surprising about this site is not that it’s misleading, but rather that there is so little information provided.”
Perhaps the most disturbing trend Miller and Hosseinzadeh found was that more than half of all websites curating information on epidural, or invasive, neurostimulation did not describe potential risk factors and harms associated with the procedure—of which there are no shortage.
“There are a number of risks to consider with epidural stimulation,” says Miller. “Some issues are related to the surgery itself—for example, infection, trauma to the spinal cord or other tissues, bleeding, clotting, and wound healing. Others are device-related issues that may occur at the time of implantation or in the immediate post-op recovery phase—there could be damage, malfunction and failure. And long-term management after implantation is another important consideration. What is the likelihood, frequency, and severity of adverse side effects? What are the restrictions in daily life—for example, showering or certain types of physical activity? What’s the battery life, rechargeability, required maintenance schedule, etcetera? Finally, is the implantation procedure, device maintenance, and long-term follow-up care affordable, covered by insurance or at= least partially billable?” While we haven’t dug deep enough to be absolutely sure, we believe the answer to this last question is, for the moment, no—at least for the vast majority of people.
All of this suggests that the public is likely to be exposed to incomplete or potentially misleading information about neurostimulation and, in particular, epidural stimulation, at a time when it’s getting a lot of publicity. This raises fears of a rise of unscrupulous actors preying on people, evoking memories of the well-documented issues with stem cell tourism.
“This is a bit beyond the scope of our review but an important question nonetheless,” says Miller. “It’s important that members of the SCI community remain vigilant about the immediate and long-term issues they might face when returning from abroad. These clinics are out there and are just a few key strokes away. Take this site for example—veritaneuro.com/thailand-bangkok. It’s published by a hospital in Thailand which offers ESCS implantation. If you look beyond the clean layout of this site and the eye-catching images, you’ll find issues. SCI is lumped together with other conditions such as stroke, and there is no information about the potential harms of the procedures being offered. There’s nothing cautioning people about the lack of support back here in Canada once the procedure has been done. Medical tourism is big business. Once the procedure is done, offshore providers are no longer liable for anything that happens to patients afterwards.”
All of this begs the question: what’s the best way to resolve this problem? “I think it would be difficult, if not impossible, to regulate or restrict clinics from posting and curating misleading information— especially when there is big money to be made in selling epidural stimulation procedures abroad,” says Miller. “As Bill Clinton once said back in the early 2000s, controlling the internet is like trying to nail jello to a wall and expecting it to stick. However, one way to circumvent ‘bad’ sites is by optimizing institutional and non-profit/advocacy organization sites that curate high-quality, evidence-based information. Putting more money into search engine optimization ensures that the ‘good’ sites will reach the top of the search engines’ lists of hits.”
As an example, Miller points to SCIRE (scireproject.com), which is led and managed by ICORD and UBC researchers, and was developed specifically to inform the SCI community —clinicians and researchers, as well as people living with SCI.
“Sites like these feature high-quality, evidence-based information on topics like neurostimulation,” says Miller. “This site, and others like it, should be optimized so that they arrive at the top of the search results list. Of course, this requires extra funding and expertise in search engine optimization techniques. I think what is important, and something worth fighting for right now, is making sure the public has access to high-quality, evidence-based information on this topic.”
The review of online information resources about neurostimulation continues, but Miller and Hosseinzadeh are hoping to wrap it up and submit it for publication later this year.
This article was originally published in the Summer 2022 issue of The Spin. Read more stories from this issue, including:
- Catheter Coverage Research,
- Adaptive Bikes
- SCI and Sexual Health
And more!
Read the full Summer 2022 Issue of The Spin online!
