Arturo, Claude and Group, Was wondering if you could comment on this term and description. While trying to research compartment syndrome and fasciotomies after trying to explain this risk to a friend, I found this term and info on Wikipedia. Arturo, in the Treatment area of this site, you have written about "judicious use of fluids to keep venous pressure above zero". This means enough fluids to keep us alive but not so much that we 'leak' these fluids into extremities causing tremendous health issues or even death, correct? This seems to fit well with this terminology and seems to have a level of awareness in the medical community. My question is just that: Is this the type of terminology we should use while in an ER type situation? Permissive hypotension or hypotensive resuscitation[1] is the use of restrictive fluid therapy, specifically in the trauma patient, that increases systemic blood pressure without reaching normotension (normal blood pressures). The goal blood pressure for these patients is a mean arterial pressure of 40-50mmHg or a systolic blood pressure less than or equal to 80. This goes along with certain clinical criteria. Realize you and others are not doctors and cannot make medical recommendations, but was asking advice around describing this ER physicians as part of being an SCLS sufferer. Thanks, Barney

Well, it's funny you should ask. While many of us have transitioned successfully to an IVIG-based therapy, and within that group virtually none of us are having episodes any more, I still worry about those who, for one reason or another, have not been as fortunate and are still experiencing, or are at risk, of having episodes of SCLS. Therefore, some of us are still trying to spread the word about how SCLS patients should be managed during an episode -- especially patients that have been properly diagnosed, because it's hard to improve the outcomes of undiagnosed patients except by raising awareness of SCLS as a condition to be spotted, awareness which, I'm glad to say, has been raised substantially when compared to 3, never mind 6, years ago. For example, I'm currently trying to get the doctor who wrote a first article on SCLS for a widely used online medical encyclopedia called "UpToDate" to change his recommendations for how to manage us patients during an episode. At present, his recommendation is that we should be treated like other patients in shock: "Hemodynamic resuscitation should target a central venous oxyhemoglobin saturation (ScvO2) ≥70 percent [and] other reasonable goals include a central venous pressure (CVP) 8 to 12 mmHg, a mean arterial pressure (MAP) ≥65 mmHg, and a urine output ≥0.5 mL/kg per hour." I've tried to point out that such a recommendation is sure to induce compartment syndromes in SCLS patients and could end up killing them (by flooding their lungs) once the leak phase stops, but there is precious little medical literature to back me up. So while I had never heard of the term "permissive hypotension" -- no wonder I'm not a physician! -- now that I read up on it thanks to your bringing it to our attention, it seems to capture EXACTLY what we need to convey to doctors in an ER or ICU setting. Still, we too must empathize and see things the way they see them. They don't want our vital organs to be damaged or us to die while having very low blood pressure readings -- namely, when we are hypotensive. Their natural inclination, therefore, will always be to give us lots of fluids. That is what they are taught to do in medical school. They certainly don't want to be sued or fired for medical incompetence. Thus, it takes a truly courageous doctor to resist the temptation to do what they always do for hypotensive patients -- but doesn't make sense for SCLS patients.