Spine and Brain Advocate’s Mission
To help as many people suffering from chronic pain, fatigue and neurological symptoms get the help and information they need, in order to self-advocate to get a comprehensive 2nd Opinion Radiology Reports by qualified Radiologists; and obtain the best available treatment possible, while saving time, effort and money.
To raise awareness and advocate healthcare changes, specifically relating to craniocervical instability (CCI) and its co-morbidities; and to gather enough information through the CCJ Patient Experience Survey” to help build a solid case for healthcare changes around the world.
To serve the brain and spinal instability patient community and their families worldwide.
MISSION: BUILDING A CASE FOR CHANGE
Spine and Brain Advocate’s working hypothesis is as follows:
⇒ It would seem that 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 injury, specifically craniocervical junction disorders.
⇒ A vast majority of primary care medical doctors, neurologists, neurosurgeons and orthopaedic surgeons do not recognize, investigate, diagnose nor treat patients for spinal instability caused by ligament laxity.
⇒ Craniocervical junction disorders are treatable. A comprehensive approach with a multifaceted and knowledgable healthcare team is necessary and would supercede any current treatment plan these patients are following today.
EVERYBODY CAN CONTRIBUTE TO BUILDING A CASE FOR CHANGE. ONE BY ONE, STEP BY STEP, WE WILL CREATE THE CHANGE TO HELP THIS UNDERSERVED PATIENT POPULATION
SCOPE OF THIS ISSUE
ME/CFS
Viral/or Bacterial Onset; There are new patterns of infections precipitating craniocervical instability (i.e. Grisel Syndrome)
CBC.ca states 580,000 Canadians live with ME/CFS.
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 ME/CFS patients’ health conditions being under-investigated? Could 1.12M to 2.46M North Americans have craniocervical instability – a potentially treatable disease?
FIBROMYALGIA
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 instability – a potentially treatable disease?
WHIPLASH
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.
Traumatic flexion-extension exerted on the spine as a result of whiplash can cause 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?
CONCUSSION
Brain Injury Research Institute states 1.6M to 3.8M sports /recreational related concussions occur in USA each year.
There are 200,000 concussions annually in Canada. 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 craniocervical junction issues?
CRANIOCERVICAL JUNCTION DISORDER
No significant research/statistics found in Canada nor USA; however some CCI statistics are found in Rheumatoid Arthritis, Down Syndrome, Older and Pedestrian populations and congenital abnormalities including Ehlers-Danlos Syndrome.
CONCLUSION
⇒ Are there possibly over 6M under-diagnosed cases of Craniocervical Junction Disorders just in North America alone? Shouldn’t medical research be conducted on the prevalence of Craniocervical Instability given the severity of disability on many of these patients?
⇒ Long term treatment success rates (surgery and possibly orthobiologics) appear to be very encouraging for a good portion of this patient population. Perhaps there are even better conservative management methods for CCI patients versus their current plan?
