It has been close to a year since my cousin passed away from complications involving a fibrocartilaginous embolism (FCE) in her upper cervical spine. Sadly, after 14 years of learning about an FCE, it is still listed as a rare disorder with most research being performed by Veternarians due to the high occurrence rate in dogs. Currently, there is still very little published about the impact of an FCE on human lives.
Why are we not hearing about the impact of FCE on human lives? Well, one reason is it usually occurs in young people (under age 30). Best restorative prognosis is in the very early years of life, but there are too few documented occurrences in older patients to encourage further study. The second reason is the lack of immediate, effective treatment as it does not respond to "clot busters" or methylprednisone, making it one of those issues with little evidence based data and a small cohort. The third reason is its misdiagnosis as another nasty neurologic issue such as Transverse Myelitis (TM), Guillian Barre (GB) or Arterio-Venous Malformation (AVM). And finally, the fourth reason being the inaccurate characterization as "death by unknown cause", further minimizing the actual occurrence rate of an FCE.
The sad, but typical scenario of an upper cervical FCE is the onset of severe headache/arm symptoms, eventual weakening and finally the shutting down of one's ability to breath or vocalize. Many of these patients simply pass away quietly; toxicology, cardiac and cerebral screens all appearing negative. Many of these cases continuing to fall into the category of "death by unknown cause". The challenge for the future is to help educate and expose the incidence of this nasty disorder, learning to question and identify it early so there can be a movement towards an effective and immediate treatment plan. This amount of suffering needs to come to an end soon..........and this diagnosis needs to be UN-cloaked.