Melinda Maxwell: Craniocervical instability -- decades of suffering before diagnosis


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What is the connection between a ‘weak bladder’ in childhood and spine surgery in adulthood?

For Melinda Maxwell, a diagnosis of craniocervical instability (or CCI) provided clarity of that connection after decades of doctors dismissing her symptoms or giving a misdiagnosis.

Craniocervical instability, as its name implies, is essentially a mechanical failure where the head joins the spine causing it to be unstable -- and it can cause a wide range of mysterious and disabling symptoms that are hard for doctors - who mostly work in silos - to connect.

For Melinda, the CCI diagnosis and subsequent surgery has given her a second chance at life. As a licensed Physical Therapist, Melinda has had to question everything she was taught in PT school as those practices can cause more harm than good in people with diseases that are medically marginalized and clinically misunderstood.

Melinda shares her health care journey to finally getting a diagnosis and proper treatment, and what she’s doing now to prevent more harm to CCI and ME patients from her Physical Therapist colleagues in the future.

Connect with Melinda Maxwell:

Post interview note from Melinda:

One thing I didn’t mention is that I haven’t had to have a tethered cord release yet. Dr. Patel is watching it. Some CCI patients have to have it released after fusion but so far my symptoms aren’t bad enough.

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Scott Simpson:

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

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