⇒ Help as many people suffering from chronic pain, fatigue and neurological symptoms get the help and information they need to self-advocate to get a comprehensive, accurate diagnosis and the best available treatment, while saving time, effort and money.
⇒ Raise awareness and advocate healthcare changes, specifically relating to Craniocervical Junction Disorders (i.e. Craniocervical Instability, Atlantoaxial Instability and their co-morbidities) and to gather enough information in the “Patient Experience Database” that will help build a solid case for Healthcare changes.
⇒ Spine and Brain Advocate is a not-for-profit organization registered in Canada; Spine and Brain Advocate’s Mission is to serve the Craniocervical Junction (CCJ) disorder community worldwide.
BUILDING A CASE FOR CHANGE
A Working Hypothesis
Spine and Brain Advocate’s working hypothesis is as follows:
⇒ A major subset of people diagnosed with ME/CFS, Fibromyalgia and people that have suffered from head & neck trauma have a structural and mechanical basis, specifically craniocervical junction disorders, to provide a pathology for their illness.
⇒ A vast majority of medical doctors (MD), neurologists, neurosurgeons and orthopaedic surgeons do not recognize, investigate, diagnose nor treat patients for CCJ Instability caused by ligament laxity.
⇒ Craniocervical junction disorders are treatable. CCJ treatment supercedes any current treatment plan these patients are following.
EVERYBODY CAN CONTRIBUTE TO
BUILDING A CASE FOR CHANGE.
IF WE DON’T DO IT, NOBODY WILL!
SCOPE OF THIS ISSUE
• Viral/Bacterial Onset; New patterns of infections precipitating CCJ Instability (i.e. similar to Grisel Syndrome)
• CBC.ca states 580,000 Canadians live with ME.
• CDC estimates 836,000 to 2.5M Americans suffer from ME/CFS.
• Clinical evidence: (>80%) ME/CFS patients with Intracranial hypertension, hypermobility and craniocervical obstructions.
• CCI experts indicate new patterns in EDS and non-EDS patients; viral/bacterial infections and mast cell activation/prolonged allergic reactions precipitating craniocervical junction instability.
⇒ Is ME/CFS being over-diagnosed? Are patients health conditions being under-investigated? Could 1.12M to 2.46M North Americans have craniocervical junction instability?
• Statscan.gc.ca estimates Fibromyalgia affects 900,000 Canadians.
• CDC states about 4 million Americans are affected by Fibromyalgia.
• Clinical evidence: cervical myelopathy, chiari malformation, spinal stenosis in significant group (>80%) of patients with diagnosis of fibromyalgia.
• Over-diagnosis of Fibromyalgia Syndrome Study… it is possible that a primary diagnosis of Fibromyalgia is being made too freely, without consideration of other diagnoses, in the setting of ill-defined musculoskeletal pain.
⇒ Is Fibromyalgia being overdiagnosed? Are patients health conditions being underinvestigated? Could 3.92M North Americans possibly have craniocervical junction disorders?
• NCBI NIH article on Acute Whiplash Associated Disorders: 70 per 100,000 people in Quebec (approx. 26,313 in Canada).
• Rush University Medical Centre states over 2 million people suffer from whiplash in USA each year; more than 50% progress to some degree of chronic symptoms as quoted from chirocareflorida.com
• Traumatic flexion-extension exerted on the spine as a result of whiplash can cause atlantoaxial instability and/or craniocervical instability, usually as a result of the disruption of the ligaments of the upper cervical spine.
⇒ Do over 1M North Americans have structural issues in the craniocervical junction?
• Brain Injury Research Institute states 1.6M to 3.8M sports/recreation related concussions occur in USA each year.
• braininjurycanada.ca states there are 200,000 concussions annually in Canada (.53%). Journal of Sports Medicine Canada / Stats Canada estimated mTBI annual incidence 600 per 1000,000 people.
• Head trauma is one of the causes of atlantoaxial instability and usually the result of a disruption of the transverse, alar and/or apical ligaments, or fractures of C1 or C2.
⇒ Are some of the 10k to 24k concussions also undiagnosed craniocervial junction issues?
CRANIOCERVICAL JUNCTION DISORDER
• No significant research/statistics found in Canada nor USA; however some CCJ statistics are found in Rheumatoid Arthritis, Down Syndrome, Older and Pedestrian populations and congenital abnormalities including Ehlers-Danlos Syndrome.
⇒ Are there possibly over 6M under-diagnosed cases of Craniocervical Junction Disorders in North America? Should medical research be conducted on the prevalence of Craniocervical Disorders?
⇒ Long term treatment success rates (surgical / surgery and possibly orthobiologics/regenerative) appear to be very encouraging for this patient population. Perhaps even better conservative management plans for CCJ disorder versus a patient’s current plan?
For information about Spine and Brain Advocate’s key pillars to leading change click here.