Retrospective chart review of the Chiari Neurosurgical Center. (IRB Approved)

In progress, is a comprehensive retrospective review of the office charts and hospital charts of the surgical branch of the Center, providing descriptive statistical analyses of our patient population, surgical series, surgical complications, and post-surgical outcomes. The later dissemination of our findings is expected to provide a wealth of helpful data for worldwide medical providers specializing in treatment for the Chiari-EDS-MCAD spectrum.

Styloid Induced Neuropathy of the Glossopharyngeal Nerve. (IRB Approved)

The purpose of this study is to learn how styloid hypertrophy clinically affects our patient population affected by Chiari I Malformation, Ehlers-Danlos Syndrome, and related disorders, as well as to understand and quantify the effects of the surgical and non-surgical treatment options which are currently available.

Surgical management of Craniocervical Instability (CCI) in patients with Connective Tissue Disorders: a prospective observational study. (IRB Approved)

We are actively investigating patient outcome of the surgical management of Craniocervical Instability (CCI), in a specific patient population affected by Connective Tissue Disorders (CTD), based on qualifying criteria and surgical techniques which have been already developed and used in our regular clinical care, at our Center, during the last 10 years.

Exploration of infectious, immune, and genetic contributors to small fiber polyneuropathy (SFPN). (IRB Approved)

The goal of our research study is to better identify and understand biological factors that contribute to the development of small fiber polyneuropathy in patients with diagnoses such as Ehlers-Danlos Syndrome, chronic fatigue syndrome, myalgic encephalomyelitis, Post Treatment Lyme Disease Syndrome (PTLDS), and fibromyalgia

Evaluating Hypermobile Ehlers Danlos Syndrome and Mast Cell Activation Disorder Using Nevisense System. (IRB Approved)

A hallmark to Ehlers Danlos Syndrome is stretchy, fragile skin, which has different physical properties when compared to the skin of the general population. We are investigating the role of the Nevisense system, a skin electrical impedance spectroscopy (EIS) device, as a tool for using EIS in identifying and diagnosing hypermobile Ehlers Danlos syndrome and mast cell activation disorder.

Exploring the Role of Artificial Intelligence in Identifying Diagnostic and Epidemiologic Patterns in Ehlers-Danlos Syndrome Patients with Spinal Disorders: A Machine Learning Approach. (IRB Approved)

In partnership with artificial intelligence (AI) experts in the United Kingdom, we are currently using the sizable patient data generated by our surgical series to analyze patterns towards refining the parameters of our screening process. We anticipate AI-based techniques for extracting diagnostic patterns from medical records of patients diagnosed with spinal disorders will enhance understanding, improve diagnostic accuracy, and facilitate personalized treatment decisions.

Exploration of Therapeutic Benefits of Plasmapheresis in Mast Cell Activation Disorder. (IRB Approved)

Excess histamine and auto-antibodies in patient bloodstream is a likely common occurrence in those suffering the autoimmune dysfunction of mast cell activation disorder. The goal of this study is to thoroughly examine the effectiveness of plasmapheresis – or therapeutic plasma exchange – as a viable therapy for patients with mast cell activation disorder.

Autologous Adipose-Derived Stromal Vascular Fraction to Repair Degenerative Neurological Conditions Refractory to Conventional Treatments. (Submitted for IRB approval)

There has been increasing evidence that certain stem cells can have significant beneficial use for a large variety of inflammatory and degenerative conditions. This protocol was designed to evaluate the efficacy of adipose-derived stem cells, derived from the stromal vascular fraction, for inflammatory, ischemic, or degenerative neurological conditions that have been refractory to conventional medical or surgical intervention.

Development of a Screening Tool for Identifying Craniocervical Instability in the Primary Care Setting. (In progress)

Our intent is to leverage the data collected from patient intake forms over the decades of our practice (thousands of patients) and develop a brief, reliable and valid screening tool that can be used in a primary care setting to accurately identify patients with craniocervical instability

Exploration of the contribution of aberrant synuclein expression in small fiber polyneuropathy (SFPN) pathology. (In progress)

The goal of our research study is to better identify and understand the fundamental biological drivers that cause and propagate small fiber polyneuropathy in patients with dysautonomia syndromes, such as Ehlers-Danlos syndrome (EDS), chronic fatigue syndrome, myalgic encephalomyelitis, postural orthostatic tachycardia syndrome, post-treatment Lyme disease syndrome, fibromyalgia, and the emerging prevalence of post-acute sequelae of Covid-19 (PASC, commonly referred to as long haul- or long-Covid).

Long Covid monitoring project. (In progress)

Long-term post-viral issues have been a known issue for patients on the Chiari-EDS-MCAD spectrum, and we have seen these problems increase dramatically in the wake of the Covid pandemic. Our goal is to identify and monitor post-acute sequelae of Covid (PASC aka. Long Covid) within our patient population and quantify reported instances, symptoms, and progress.