Back in June I ordered a Transcutaneous Electrical Nerve Stimulation (TENS) therapeutic device, to see whether it would help reduce – even temporarily – the severe pain of CRPS. Complex Regional Pain Syndrome is still often referred by its old name, Reflex Sympathetic Dystrophy. If you see Read More …
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 …
