CCJ Patient Experience Results 2022

Spine and Brain Advocate’s CCJ Patient Experience – Summary of Patient Responses January 1, 2021 and ending December 31, 2022.

SBA would like to take this opportunity to thank all participants who took the time to complete the CCJ Patient Experience Survey.  If you have updated information, please feel free to complete the survey again.

Some of the insights gained from the survey analysis which was completed by a Consultant PhD Bioinformatics, include:

  • Majority of participants that completed the survey were females located in Canada and USA


  • Over 50% of the survey participants have a CCI diagnosis (which is interesting because at this time the majority of Canadian physicians do not recognize craniocervical instability as a “legitimate” medical condition; most of these patients have likely gone out of country to receive their examination and diagnosis)


  • 37% of the participants stated they have little knowledge of CCI and 55% reported they have fair to expert CCI knowledge (more details can be found in the report below)


  • Majority of survey participants have been ill for greater than 10 years


  • The top reported illness onset triggers were 58% head and neck injury;  39% Ehlers-danlos Syndrome/Hypermobility disorder,  32% viral infection and  26% Mast Cell Activation Syndrome / prolonged allergic reaction


  • 79% of the participants were on the side of dissatisfaction with their medical investigations


  • For information on which craniocervical junction measurements (i.e. CXA, BDI, ADI etc.) were reported as abnormal in patient participants, and more,  see the CCJ Patient Experience Results 2022 below…

Note:  The CCJ Patient Experience Survey has been updated as per the recommendations of the Consultant PhD Bioinformatics.

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Complete the CCJ Patient Experience Survey