How closed-loop spinal cord stimulation gave her a new outlook
Watch this exclusive video interview.
Watch this exclusive video interview.
This story is a combination of immediate impact and slow progression of Parkinson’s Disease, a degenerative brain disorder, and how one man changed his cards to gain a better quality of life.
As a cardiac anesthesiologist, Jon was living his dream. He had a great job, a wonderful wife and two beautiful daughters. Although there was stress related to his job and long hours, he truly enjoyed his work. A strange symptom surfaced that sparked Jon to seek medical assistance. He was pouring a Coke into a glass and observed his pinky finger quivering. That was it, a tremor. That tremor motivated Jon to seek the advice of a neurologist. Without any hesitation, the neurologist diagnosed Jon with Parkinson’s Disease. He was 38 years old. After receiving the news, there was a sense of relief. He was relieved to have a name associated with the strange symptoms he was experiencing. Now that he had a diagnosis, he educated himself about the disease and ways to manage the symptoms.
The initial symptoms of Parkinson’s Disease can be very subtle and often do not surface until the symptoms reach an escalated level. People can have Parkinson’s Disease all their lives but they do not receive a diagnosis until a larger amount of neurons in the brain begin to be impacted. At that point, the outward symptoms begin the surface.
Accepting his diagnosis, Jon began to educate himself about the disease and inventory his options. Being an anesthesiologist helped with his quest. One of his options for the treatment of Parkinson’s Disease is a medical device called Deep Brain Stimulation (DBS). Several times in the past, Jon had been the anesthesiologist during surgeries to implant deep brain stimulators. Even with this knowledge, Jon took the medical advice and began the typical pharmaceutical regime of taking a myriad of medications.
As Jon began to do his research about DBS, he watched video after video on the internet about success stories of people who received a DBS system. Not all of the videos were about success stories. Jon watched one video about a man for whom the DBS was not successful and he had the device removed. In his research, Jon educated himself about the system, how it works, the surgical procedure, the complication rates and spoke with other doctors regarding the DBS technology. He approached his neurologist with an inquiry as to whether he would be a candidate for the technology. Once Jon asked, his neurologist agreed that he would be good candidate.
As he became more resistant to the medications, his symptoms began to impact every aspect of his life. He was no longer able to work much less perform basic activities of daily living. For Jon, DBS was an option he couldn’t deny. “Once I get my wires, I’ll be able to function.”
The day that the system was activated was a vivid day for him. His appointment was for one o’clock in the afternoon. That morning, he could not take any of his medications and his body reacted to the lack of medications. His symptoms were severe as Jon’s body became stiffer and stiffer. To one point, he could hardly move. He went to the hospital early with the escort of his parents. His doctor came into the waiting room and said, ‘Come with me.’ It was time to activate the system; one side of the electrode at a time. His doctor activated one side and immediately the stiffness in Jon’s muscles melted away. The DBS system gave him new freedom of movement that was strangled by Parkinson’s Disease.
This short story is an adaptation of Jon’s full story featured in the book Bionic Pioneers.
There are many symptoms associated with Parkinson’s disease. There’s an array of options includes those of neurotechnologies like DBS, robotic therapy, peripheral nerve stimulation, and more. Learn about neurotechnologies for Parkinson’s disease with our neurotech directory
Kierstin was diagnosed with primary progressive multiple sclerosis a few years ago. Her physicians discovered lesions in her spine that indicated the disease. This is not the typical way to find MS. The most common way is the discovery of lesions in the brain. Getting to a diagnosis did not come easy for her, which is more common than you might think. Typically, a clear diagnosis is not found until the person has outward symptoms of the disease.
Multiple sclerosis is a complex neural degenerative condition. According to a study published in the journal Neurology, multiple sclerosis (MS) is the most common progressive neurologic disease of young adults worldwide. There are nearly 1 million people living with MS in the United States and an estimated 2.5 million worldwide. The condition is more prevalent in women and the average age of diagnosis is 32.
Multiple sclerosis is a progressive immune disease attacking the central nervous system, including the brain, spinal cord, and optic nerve. The disease impacts the myelin sheath that protects nerve fibers. Once any part is damaged, then nerve impulses are disrupted when traveling to and from the brain or along the spinal cord. This results in a variety of symptoms of the disease.
For Kierstin, she was a black belt with 4 children and married. She has a very active family. Gradually, she was not able to do even a classic karate move. Her doctors first told her that it was aging. When she started having other symptoms like back pain, drop foot, and problems urinating, she knew there was something wrong.
She found an Artificial Intelligence (AI) online tracking tool that will take brain MRI scans and cover them to easy to understand, visual images and allows for tracking of MRI images over time. Kierstin found this new online tool by clicking on a Facebook ad, which she admits she never does, but she is happy that she did.
This is not a tool to self-diagnosis. She says it gives her the tools she needs to have a better and more productive conversation with her doctors. “It let’s me say things to my doctor that I normally wouldn’t,” she admits and uses the tracking of her brain scans as evidence for what she is experiencing. As a mother of four, she is very leary of giving her personal information out. When signing up for this service, she was apprehensive and decided to call the company. To her surprise, when she contacted them, it was an actual human who answered her call.
She values this technology and asks for more. It is a way for her to track the progression of her multiple sclerosis with knowledge so she can be active in her future decisions.
There are so many options for treating chronic pain but finding the right solution and getting the right diagnosis is like trying to find a needle in a haystack. Jill is no exception. Living in rural Wisconsin, she lives a very active lifestyle with her husband and three children, enjoying the outdoors and being small business owners. But when her pain started to interfere with her lifestyle, something had to change.
Jill remembers always having aches and pains, even when she was young and raising her children. The chronic pain in her lower back transformed into becoming systemic and she could no longer have a direct cause for the pain such as lifting a child the wrong way or twisting too much while gardening. The pain was constant and she wanted to know why and how to fix it. While in her 30’s she was diagnosed with fibromyalgia, but she as not satisfied with that labeling of her pain.
Not having a clear treatment guideline, she began to try various options. First was pharmaceutical. She tried a few but did not like the way she felt and truly opposed taking medications over a long period of time. She then began to see a chiropractor, but that did not help either. She then tried an osteopathy and then physical therapy but neither was effective. Jill’s back pain persisted. She then opted for some cortisone injections into her back. It helped temporarily, but the nagging pain in her lower back would come back before she could schedule another injection. Not finding a solution in the medical field, Jill started to look elsewhere. She tried gadgets sold on-line and over broadcast television. She felt like she was “chasing rainbows” and spending a lot of money trying to find a treatment.
Jill was on the internet searching, hunting for a solution. She found the manufacturer of a percutaneous electrical nerve stimulation (PENS) device. While speaking to the company representative, she was cautious at first, even a little skeptical. She was familiar with transcutaneous electrical nerve stimulation (TENS) but not PENS. TENS units use pulsed low frequency electrical current delivered from a small unit through two electrodes placed on the surface of the skin. The electrodes are small pads with a sticky gel to help conduct the electrical activity from the unit through the surface of the skin. A PENS device sends alternating high frequency current signals from the unit through deep tissue electrodes also placed on the surface of the skin. The PENS electrodes are different from TENS electrodes because they have microscopic needle-like probes that penetrate the surface of the skin to deliver the current deep into the tissue. The deep tissue treatments tend to have a long lasting effect. Clinical trials have also demonstrated not only a reduction in pain, but improved range of motion and reduced muscle spasms.
Jill got a prescription for the device from her doctor and ordered the device for home delivery. Upon arrival, Jill set up the small, pre-programmed, portable device and placed the electrodes on her lower back. Trying the device for the first time, she could feel the electrical pulses on her skin but it was not uncomfortable like an electric shock. Instead, it felt more soothing like a massage. More importantly, the pain relief was almost immediate. There was no waiting for a medication or taking time to drive to an appointment. This small, handheld device was giving Jill relief from the pain that has been haunting her for years.
Over time, she has found her body to be flexible again and her movements more fluid. After playing volleyball with her son, her shoulder was bothering her the next day. She placed the electrodes on her shoulder area and with one treatment the shoulder pain extinguished. With consistent use, Jill has found the intensity of her daily lower back pain has decreased and confidence in her motions is back. “I just don’t hurt any more,” she declared.
Not all chronic pain is the same and that warrants the many options that people have for treating it. The key is to try the variety of options to find the right solution. Learn more about neurotechnologies for pain management with our neurotech directory.
It was an air trauma nurse who found Mike. She was driving to work late at night when she saw taillights coming from an irrigation canal off the side of a rural road in northern California. After working a long day as a general contractor, Mike was driving home in his work van when he had a seizure and drove off the road into the canal. Once in the ER, the doctor told Mike that he had a seizure, he was no longer able to drive, and they treated him for a possible heart condition.
From that point forward, Mike’s seizures became more frequent, having at least one every week. Those that he noticed were strong seizures resulting in physical injuries like dislocated joints or broken bones. He was prescribed a slew of medications but nothing seemed to work. The seizures kept coming. One of his general contracting clients suggested that he go to the Mayo Clinic in Rochester, MN. On the flight from Redding, CA to Rochester, MN he had a seizure and woke up in a Denver hospital. He then tried an Amtrak train and bus to get to Rochester but had a seizure while in transit too. Finally, he found a friend who would drive him to Rochester. There, he was diagnosed with epilepsy and began treatments at the Mayo Clinic.
Mike found himself jobless, broke, and divorced two years after diagnosis at the Mayo Clinic. His life now revolved around epilepsy. He moved to Phoenix to continue receiving care through the Mayo Clinic’s satellite location. Despite the treatments, Mike was still having grand mal seizures with loss of consciousness and violent muscle contractions. The seizure frequency was now every 3-6 days. He began to withdraw
al from society. Mike was attempting a variety of treatments from vagus nerve stimulation to brain resection. Still, it was a roller coaster of promising treatments that only led to disappointment from poor results. “For years, the doctors did not believe me when I showed them my seizure diaries,” Mike says. “It was like I was doing something wrong to spark the seizures.” Living on disability assistance, Mike had to do something to change his life path, so he enrolled in a community college.
One of his doctors suggested that he participate in a clinical study of the NeuroPace RNS System for refractory focal epilepsy. The RNS neurostimulator is a device similar to a heart pacemaker but for the brain. Mike’s RNS System monitors his brain activity 24 hours a day, and recognizes & responds to his unique brain patterns to stop his seizures before they start. It also records Mike’s brain activity, which provided insights that enabled his doctors to optimize his epilepsy care. After the procedure and his recovery, Mike was back attending college classes.
As part of the RNS System clinical study, he was required to keep a seizure diary. Reviewing his diary entries with the research team, they would compare his documented seizures to the sensing activity from the RNS System. The data would match. “For years, I tried to explain all the seizures I was having. Now with this device, the data validated it,” he said. For Mike, that was his eureka moment when he felt the data gave him a voice. As they studied the seizure diaries with the sensing and stimulating data, they found triggers that would spark seizures like heat stress or a high carbohydrate intake. These were behavioral items that Mike could control, and did, by adapting life activities. He went from experiencing seizures every 3-6 days to having them every 2-3 months. Mike felt more in control, that he could get his life back. He started feeling “normal” again.
Still using the RNS System, Mike earned his Bachelor’s and Master’s degrees in social work. He graduated from both ASU & the Mayo Clinic School of Health Sciences. While working on his degrees, Mike started giving back by working as a Mayo Clinic Social Worker and visiting other people with epilepsy at the Mayo Clinic-Phoenix hospital. Eventually, the pages of Mike’s seizure diary were blank and he realized he had become seizure-free. He later moved to Portland, Oregon, found a job, and returned to being social. Putting his passion to work, Mike is now a Patient Educator for NeuroPace working with others living with epilepsy.
Learn more about the RNS device and Neuropace here: https://www.neuropace.com/the-rns-system/
Pioneers are not made; they are missioned. Conventional thinking points to scientists, engineers, and entrepreneurs as the sources of innovation. They definitely have a hand in the process, but we often forget the influence that the end-user, or consumer, has on the technology innovation process. Jim was one of those pioneers that shaped generations to come in neural prosthetics. Jim was an average guy, born and raised in Northeastern Ohio. He graduated from the University of Akron with a mechanical engineering degree and went to work for Firestone in Ohio. He had a loving family and married the love of his life. He had his beloved hobbies like playing pool, scuba diving and working on his green Chevy Camaro. The oldest of six, Jim spent much of his free time with his family and his younger siblings.
One summer afternoon, Jim dove into the lake to cool off on a hot summer day after helping to paint his sister’s house. He hit a shallow spot, compressing his head into his spine and paralyzed him immediately. Jim couldn’t move and couldn’t feel a thing. Being the first on the scene, his sister, Judy, pulled her brother to the surface in a panic to save him. “I can’t feel a thing,” Jim said. From that point on, Jim entered the world as a high quadriplegic, unable to move his four limbs, care for himself, or create the mechanical drawings that he loved to do. Life would be forever different. Jim later became one of the fire people to try an experimental implanted neural prosthesis to restore function in his arms and arms….this was back in the 1980s.
Remember: We are standing on the shoulders of pioneers like Jim.
Learn more about neurotech applications for spinal cord injury.
Read more of Jim’s story in the book, Bionic Pioneers. Proceeds go toward Neurotech Network.
The feeling that you have exhausted all of your options. Have you ever felt this way? For many people who know that feeling, the search for alternatives almost becomes a life pursuit. This is a common feature among people who use alternative therapies. For Patrick, he went down a similar path. Medically discharged from his career as a medic in the military, Patrick found himself retired at a relatively young age. While in the process of building his house, he started to get panic attacks. Clinically, it could be classified as anxiety, depression, or even PTSD but for Patrick is was impacting his daily life.
Over the course of four years, he tried various pharmaceutical treatments for either anxiety or depression. He tried traditional therapies with his psychiatrist, but nothing seemed to work. He even tried ECT sessions without success. “It was just day after day after day. It is doesn’t seem to stop.” Feeling like he had tried all of his clinical options, he started to look for other lifestyle modalities in the field of wellness. Diet and meditation seemed to help but they just didn’t get him to a sense of balance. “I just ran out of ideas,” he expressed about his search for balance and away from the roller coaster of anxiety and depression.
He was on Facebook one day and saw an advertisement for a device that uses pulsed electromagnetic field therapy (PEMF). Patrick swore he would never buy anything on Facebook, but he felt compelled to click on this advertisement. PEMF is a therapy that has long had different forms over the decades but its history dates back to ancient eastern medicine in the use of magnetic fields. The technology used today takes the form of a home-use device that is non-invasive and worn as a headset. Patrick was not convinced this type of therapy could help him but he decided to learn more about PEMF.
To him, science is important so he looked into the scientific research on PEMF. He found nothing that raised the red flags about the therapy. With claims that it could help him with sleep, relaxation, and meditation, there was some potential with this therapy. He even discussed it with his psychiatrist. She was aware of PEMF and encouraged him to try it. As a device that can be purchased on-line, he was skeptical but the vendor offered a 60-day money-back guarantee and they accepted Paypal. He bought it.
Within 5 days, he saw results. He uses the device to help him with meditation. It seems to help him focus. After more use, Patrick started to see a change in his sleep patterns. Before using PEMF, he was a restless sleeper and would typically get three hours of sleep per night. Now, he is enjoying a full 8 hours per night. Today, he uses it twice per day along with meditation. He feels like he has some normalcy back in his life. For others in a similar situation, Patrick advises to “Do the research and find a good doctor who can help guide you.”
“It’s pretty self-explanatory.” That is how Amanda, an Army veteran, describes a new non-invasive high-frequency neuromodulation device. “There is a small square on the patch. It is quick and easy to use.” Amanda has been living with chronic pain ever since she was medically discharged in 2016.
She spent eight years on active duty. Her last deployment was 13 months in Afghanistan, the location of her initial injuries. While out on patrol, Amanda was tossed from her vehicle during an accident. Initially she was diagnosed with a complex fracture in her foot and ankle, but she completed her tour regardless of her injuries. With her first foot surgery, the pain and function went from bad to worse and had to endure a second surgery only four weeks later. With detached ligaments in her ankle, Amanda went through six months of physical therapy but she was still in pain and never recovered a proper gait. Later, her physicians found that her shoulder also had damage from the accident and it was dislocated.
Her case became even more complex when she was in a truck accident. This time, she was not in the truck but under it. During the accident, the vehicle rolled over her leaving Amanda with multiple injuries including a traumatic brain injury and severe neck pain. Recovery from that accident was long with lingering effects. Amanda developed migraines and after the truck accident, she had to go through shoulder reconstruction surgery. Still with a poorly functioning foot and ankle here gait was off and later developed chronic lower back pain.
With severe pain in her foot, ankle, neck, shoulder and lower back, what do you treat? She went through the regime of various medications. As it turns out, the kind that works for her is considered a controlled substance and the VA will not prescribe them to her. Amanda chose to go with no pain medications if she can’t get what works. For the time being, she was self-treating with hot and cold packs, TENS units and physical therapy. She even attempted a trial for a spinal cord stimulation system. Amanda failed the trial due to vertigo sensations and was never implanted. As her pain progressed, she has been campaigning her VA doctors to simply amputate her damaged ankle and foot, just so she can have functional and pain-less walking.
When she first tried this new high-frequency stimulator, she was hesitant. After trying several other surface stimulation systems, she did not want to have the vertigo sensation again or develop a severe headache. Upon her first try, she put the sticky patch on her neck and turn it on to a low level. She felt the sensation but it didn’t do much to help the pain. After some briefing from the customer service team, she turned up the intensity and after an hour of use, she could feel the difference with no other side effects. Amanda now uses it every day after work on her shoulders, back and neck. She tried using it on her foot but the standard patches don’t quite work for that. In the end, the stimulation device gives her “good relief in my neck, back and shoulder blades.”
This veteran’s name and photo have been masked to protect his identity.
All too often neurological conditions are complex and there are combined conditions to treat for one person. This is a story of a veteran living with PTSD and chronic pain.
High altitude is high adrenaline for Ray, a retired Marine serving from 1997 to 2003 with two years in Iraq then Marine reserves until 2012. He was conducting reconnaissance missions that logged more than 300 jumps from airplanes at a high altitude. From that flight level, your thoughts revolve around the oxygen that you need at the time but not the real toll that jump is taking to your body upon landings. With over 560 parachute landings under his belt, Ray’s back and legs were damaged in the process. When he returned from the combat zone, he knew that he had mental health issues but pushed them aside for work. He found himself drinking and isolating himself and then turning to suicide to ease the pain. He was diagnosed with spinal disc damage and as a result lives with severe chronic pain.
It was not until 2009 did he finally seek help. The DAV (Disabled American Veterans) assisted him with his paperwork. When he finally received help, he was diagnosed with PTSD. He finds his network of fellow veterans helps him with his PTSD and he also volunteers for the veterans crisis line. In 2012, two major events happened in his life. His wife signed him up for the VA wheelchair games and after doing so she passed away. Still grieving from the loss of his wife, he attended the VA wheelchair games any way. He found that attending those games was the greatest gift his deceased wife could give him. He recognized that he is not alone and there are other veterans living with PTSD. Adaptive sports and, even more so, the competition helped him turn his life around.
But even with adaptive sports, work, and volunteer duties, Ray still deals with chronic pain on a daily basis. He finds in the evenings when things settle from the day, he slips into symptoms of PTSD and he focuses on his pain. Both make it difficult for him to sleep. He tried many different treatments but just dealt with the pain. This scenario frequently happens with people living with multiple complex conditions. Treating clinicians tend to focus on one area rather than looking at how the various conditions can mask or magnify other conditions. In Ray’s case, he tries to live with the pain while addressing the symptoms of PTSD.
A novel neuromodulation device was introduced to him as a non-invasive high-frequency surface stimulation device. He agreed to try it for three months to see how it works. After one week, his response was “this thing is amazing.” With 6 slipped disks in his back, his pain ranges from his legs, back and arms. He wears the device for 4 hours per day which happens to be the life of its rechargeable battery. “It feels like a vibration on the skin, like a deep massage,” Ray explains. The small adhesive patch with a smartwatch size processor is a wearable that recently came onto the market with FDA clearance. Ray wears it all day and can’t tell that he is wearing it. On first use, he feels pain relief within 10-15 minutes of turning the device on with a residual effect for about 24 hours. He feels like his pain levels have dropped by 20% within just one week of use. The device connects to a smartphone app allowing Ray to control the device including the levels of current going into his body with a range of 0 to 100 milliamps. He has tried TENS units before but this is nothing like a TENS. “There are no wires and it’s comfortable like a massage.” Even his mother noticed a difference in Ray, she mentioned to him that he has been able to focus more than before. With his pain reduced, Ray’s mind can now concentrate on other things other than his pain.
The atypical stoke survivor is over the age of 55. In this case, Andrew survived a stroke five decades earlier at age 15. While competing for his high school rugby team, Andrew executed a big tackle. In that maneuver, his opponent’s hipbone collided with Andrew’s face, breaking his jawbone, slicing into his carotid artery, and sending a blood clot to his brain.
It was three in the afternoon and Andrew was rushed to emergency services. He was stabilized and treated for his apparent injuries but the blood clot went undetected. Four hours after the accident, he started to feel the symptoms of a stroke. His right arm became weak. When he tried to speak to alert the medical personnel, he could only produce a few grunts and no comprehensive words. Reasoning that it was a side effect of the pain medications, Andrew went to sleep. At midnight, the blood clot released, damaging sections of Andrew’s brain and leaving him with paralysis on the right side of his body, impaired speech.
Speech therapy, physical and occupational therapies were part of his rehabilitation process. After conventional methods of therapy, he began to plateau in his progress after 18 months. While reading the newspaper, Andrew’s mother learned of a research study recruiting stroke survivors for an experimental electrical stimulation therapy. Andrew joined the trial at the Toronto Rehabilitation Institute. The device used surface stimulation along with patterned movements. For six months, Andrew and his mother drove to the laboratory for treatments. He began to see the benefits of the therapy and gained the ability to open and close his hand. Later he regained use of his arm and even the dexterity in his fingers.
Andrew is a pioneer as one of the first people to participate in this study for a novel therapy. Read more about his story and how the technology is impacting his life in the book, Bionic Pioneers.
Learn more about neurotech for stroke survivors in our directory here.