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.