Those of us with rare diseases use a couple of animals terms differently than most other people do. First off, someone with a rare disease is a ‘zebra’, a kind of play on words on an expression used in medicine; “When you hear hoofbeats, think Read More …
Based on the recommendation of my physiotherapist, and a specialist surgeon who stopped by to see me – well, really to see my rare disease! – in the day-surgery operating room (OR) last week, I’m trying a new approach for my fingers, hand, and wrist. As Read More …
Right after my second Bier block this week (my eighth day-surgery procedure in less than 2 months!), my neuro-anesthesiologist broke some bad news. He told me there are no other procedures or medications we can try, to get my right hand and arm working again. Read More …
No, this post isn’t about delivering a baby! It’s about what happened when the anaesthetic wore off from a nerve block. It was my first Bier block, also called an IV block, for Complex Regional Pain Syndrome (CRPS). You can read more about Bier blocks Read More …
CRPS is a rare disease, and presents differently in each patient. In medical terms, the: CRPS population is heterogeneous, with distinct subgroups that exhibit different clinical and biochemical features, thereby exhibiting a varying response to treatment” (1) My translation of what this means is that Read More …
Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD)? The physicians I’ve dealt with so far don’t even seem to agree on its name! No surprise that it’s so difficult to find a good, brief, description of CRPS, so I’ve cobbled together my own. Read More …
