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 

ME/CFS

• 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?

 

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 junction disorders?

 

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 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?

 

CONCUSSION

•  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.

 

CONCLUSION

⇒  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.

Information about craniocervical junction disorders and common spine and brain diseases, click here.