“A decade ago, my life changed forever. I was teaching at a university and consulting as a CPA. I was a competitive tennis player. I had a full life. And then I was in a severe motor vehicle accident.
I remember climbing out of the car and feeling fine, walking around the crash site, trying to help, seeing if anyone was injured. It wasn’t until later that I realized how much pain I was in. And then things got progressively worse.
My spine never felt right after the accident. I couldn’t move properly on the tennis court. My neck would swing side to side, and I’d get lost in a daze for days at a time. I wasn’t able to keep up my employment. It got to the point where the amount of time I could spend upright was reduced to basically zero. I couldn’t hold my head up long enough to even wash my face.
Unfortunately, understanding of craniocervical instability (CCI) is virtually nonexistent in Canada. I had to go to New York for an upright MRI to get the diagnosis. As I was travelling around, learning about the neck and spine, I was meeting all kinds of people, and the teacher in me kicked into gear. I love talking to people and I was asking every patient I met all about their story. I met people from all walks of life. A bodybuilder with persistent neck issues. People with Ehlers-Danlos syndrome. People whose CCI appeared to be connected with Lyme and COVID. What we all had in common was that we were experiencing significant issues with our necks, but we couldn’t find appropriate guidance and care in the Canadian system.
“Unfortunately, understanding of craniocervical instability (CCI) is virtually nonexistent in Canada.”
Once I’d seen this thread, I had a vision of a wholesale change in the way we understand CCI and other complex conditions in Canada. I started going to conferences, presenting Q&As with top doctors, and built a website with my daughter. It’s an inclusive trove of resources for people with all sorts of difficult-to-diagnose chronic illnesses.
Recently I was able to present the website to the Ministry of Health and explain what needs to change. We need diagnostic criteria. We need these conditions added to the med school curriculum. We need validity.
We need to be seen.”
.jpg)
