Arnold-Chiari Malformation

The MedCity INVEST conference, held at the Ritz Carlton in Chicago this week, offers enterprising healthcare startups the opportunity to connect with investors and other potential partners. One such entrepreneur is Robert Lewis, the founder of Freedom to Roam, a medical device company seeking to help people with mobility challenges. When he was younger, Lewis was diagnosed with Chiari 1 malformation, a condition that arises as the skull and brain are developing, leading to brain tissue extending into the spinal column. He also has syringobulbia, a rare disease involving the spine and brain stem associated with Chiari 1 malformation. Robert Lewis, Freedom to Roam Founder Lewis developed surgical bacterial meningitis in 2005 when he underwent a procedure to remove scar tissue formed from his previous surgery. He said the infection nearly killed him and led to the loss of the use of his hands and arms. He also contends with chronic pain, but relies on aspirin, meditation and medical cannabis patches to manage it. Referring to himself as an “incomplete quadriplegic”, Lewis said although he cannot use his arms or hands, he does have the ability to walk. As he struggled to come to grips with his predicament, he dreamed about a device that could help him walk. He developed a mobility device that supports his body weight to make walking safer and easier for himself and others called the Independence Stand-Up Walker. “I was having to really concentrate hard on walking — I wanted to save my legs. I had a dream about how to build a walker from top to bottom that would help me keep my legs in shape.” Applications for the device span complex neurological conditions, stroke survivors, amputees, and supporting people with obesity. Although the height of the device can be adjusted, Lewis is developing a smaller version of the device for children. Lewis said the three year-old business based in Iowa has produced 100 units in Illinois, which are in final construction and will soon be available for purchase. Featured

NEW YORK, April 4, 2023 /PRNewswire/ -- Dr. Arthur L. Jenkins III, MD a neurosurgeon who is an internationally recognized leader in minimally invasive spine surgery, has just published two papers that are derived from the largest published study of patients with Bertolotti's Syndrome (a condition frequently misdiagnosed, and therefore often untreated). The two articles were recently published together in the World Neurosurgery Journal. Some people are born with a congenital variation in the spine, known as a lumbosacral transitional vertebra (LSTV), which is where the transition between 5 similarly formed lumbar vertebra (LSTV) and the 5 fused sacral vertebra is "blurred" or partially differentiated at the transition between the two structures. LSTVs are actually quite common, found in up to 1/3 of the population, and don't always cause pain, even though some doctors mistakenly believe that they NEVER cause pain. Bertolotti's Syndrome is when the congenital anomaly is the source of one or more kind of pain: back, hip, groin, or leg pain. These patients sometimes have normal MRI findings, or sometimes an asymptomatic finding may be mistaken for the cause of their pain, which then sends the treating clinicians down the wrong pathway. Many doctors and spine practitioners may not be familiar with Bertolotti's syndrome, and therefore not recognize it. Dr. Jenkins explains: "seeing is believing, but believing is necessary for seeing. If you aren't aware of a condition or a syndrome, you won't see it even if it is right in front of you. Too many of my patients have been told 'that can't cause your pain' for years, and when we get that LSTV injected and they have a brief but dramatic respite from their pain, it's often an epiphany for them." Dr. Jenkins understands how differences in anatomy change the treatment strategy. He then developed minimally invasive surgical techniques for when less invasive treatments fail. Most surgeries are done on an outpatient basis. This study provides the evidence for his treatment strategy, providing the least invasive but most effective treatment for each patient. Jenkins NeuroSpine is a concierge-style private practice with offices in Manhattan, NY and Greenwich, CT that specializes in treatment of all types of common and rare spinal conditions, from Chiari malformations to coccygectomies, disk herniations of all types to spinal fluid leaks and repairs, and everything in between, using endoscopic, microscopic, exoscopic, stereotactic navigation, and all other advanced technologies. As one of the very few private practices in the US with its own research department, Dr. Arthur Jenkins is at the forefront of developing advances in spine related diagnosis and treatment. Dr. Jenkins' passion for finding the least invasive but most effective treatments for all his patients motivates this goal for his patients: We Turn Patients Back Into People!™. For more information, or to schedule a consultation, please call (646) 499-0488 or visit jenkinsneurospine.com SOURCE Jenkins Neurospine

A new study suggests that some patients diagnosed with behavioral-variant frontotemporal dementia (bvFTD) -- an incurable condition that robs patients of the ability to control their behavior and cope with daily living -- may instead have a cerebrospinal fluid leak, which is often treatable. A new Cedars-Sinai study suggests that some patients diagnosed with behavioral-variant frontotemporal dementia (bvFTD) -- an incurable condition that robs patients of the ability to control their behavior and cope with daily living -- may instead have a cerebrospinal fluid leak, which is often treatable. Researchers say these findings, published in the peer-reviewed journal Alzheimer's & Dementia: Translational Research and Clinical Interventions, may point the way to a cure. "Many of these patients experience cognitive, behavioral and personality changes so severe that they are arrested or placed in nursing homes," said Wouter Schievink, MD, director of the Cerebrospinal Fluid Leak and Microvascular Neurosurgery Program and professor of Neurosurgery at Cedars-Sinai. "If they have behavioral-variant frontotemporal dementia with an unknown cause, then no treatment is available. But our study shows that patients with cerebrospinal fluid leaks can be cured if we can find the source of the leak." Cerebrospinal fluid (CSF) circulates in and around the brain and spinal cord to help cushion them from injury. When this fluid leaks into the body, the brain can sag, causing dementia symptoms. Schievink said many patients with brain sagging -- which can be detected through MRI -- go undiagnosed, and he advises clinicians to take a second look at patients with telltale symptoms. "A knowledgeable radiologist, neurosurgeon or neurologist should check the patient's MRI again to make sure there is no evidence for brain sagging," Schievink said. Clinicians can also ask about a history of severe headaches that improve when the patient lies down, significant sleepiness even after adequate nighttime sleep, and whether the patient has ever been diagnosed with a Chiari brain malformation, a condition in which brain tissue extends into the spinal canal. Brain sagging, Schievink said, is often mistaken for a Chiari malformation. Even when brain sagging is detected, the source of a CSF leak can be difficult to locate. When the fluid leaks through a tear or cyst in the surrounding membrane, it is visible on CT myelogram imaging with the aid of contrast medium. Schievink and his team recently discovered an additional cause of CSF leak: the CSF-venous fistula. In these cases, the fluid leaks into a vein, making it difficult to see on a routine CT myelogram. To detect these leaks, technicians must use a specialized CT scan and observe the contrast medium in motion as it flows through the cerebrospinal fluid. In this study, investigators used this imaging technique on 21 patients with brain sagging and symptoms of bvFTD, and they discovered CSF-venous fistulas in nine of those patients. All nine patients had their fistulas surgically closed, and their brain sagging and accompanying symptoms were completely reversed. "This is a rapidly evolving field of study, and advances in imaging technology have greatly improved our ability to detect sources of CSF leak, especially CSF-venous fistula," said Keith L. Black, MD, chair of the department of Neurosurgery and the Ruth and Lawrence Harvey Chair in Neuroscience at Cedars-Sinai. "This specialized imaging is not widely available, and this study suggests the need for further research to improve detection and cure rates for patients." The remaining 12 study participants, whose leaks could not be identified, were treated with nontargeted therapies designed to relieve brain sagging, such as implantable systems for infusing the patient with CSF. However, only three of these patients experienced relief from their symptoms. "Great efforts need to be made to improve the detection rate of CSF leak in these patients," Schievink said. "We have developed nontargeted treatments for patients where no leak can be detected, but as our study shows, these treatments are much less effective than targeted, surgical correction of the leak."