The old timers around here will remember the epidemiological study on swimming induced pulmonary edema that Francois, Katwoman and I did several years ago. That work grew out of a series of threads here on Slowtwitch, was conducted in coordination with USA Triathlon and ultimately was published in the American Journal of Emergency Medicine - a publication strategy intended to maximize exposure of emergency medicine docs and first-responders to the characteristics of this entity. When I had my own SIPE episode a decade ago, no one knew what it was, so it was a high priority for me personally to address that gap in provider knowledge.
Anyway.... that experience has recently got me thinking about sport-limiting vascular problems; things like iliac artery endofibrosis in cyclists, thoracic outlet syndrome in swimmers and baseball pitchers, popliteal entrapment and other lower extremity problems that cause compartment syndrome-like symptoms. There are multiple approaches to treating these problems, not a lot of consensus or high-quality data about what works and what doesn’t, and no real high-volume centers with a lot of experience, because these problems are not particularly common in any local community, but in the aggregate they occur in fair numbers and are devastating to the people who struggle with them. I have helped several Slowtwitchers identify qualified surgeons to address these problems over the years (and not just from my group - I try to be unbiased in these things), but I would really like to know more about scope and scale of these kinds of problems at the national level.
My research group has recently started a nonprofit that focuses on patient experience with vascular disease in general, but I am particularly interested in the issues mentioned above. In preparation for more formal work on this topic, I would be grateful to hear from any of you in the Slowtwitch community that have dealt with these problems, particularly with respect to length of process to get a proper diagnosis, inappropriate treatment based on an incorrect diagnosis, access to a treatment plan you found acceptable once you had a proper diagnosis, type and results of treatment, and your satisfaction with the process and the outcome. Ultimately I would like to do this on a large scale as we did with SIPE and USAT, but I would like to develop enough background to make this effort meaningful. Feel free to PM if you don’t want to reply publicly.
Finally, as a shameless plug, our little nonprofit is hosting a 5k to start raising awareness next weekend. If you are in the Houston area we’d love to have you join us. I have a link posted in the Notices forum, in keeping with Slowtwitch community policy.
Many thanks.
Trey
Anyway.... that experience has recently got me thinking about sport-limiting vascular problems; things like iliac artery endofibrosis in cyclists, thoracic outlet syndrome in swimmers and baseball pitchers, popliteal entrapment and other lower extremity problems that cause compartment syndrome-like symptoms. There are multiple approaches to treating these problems, not a lot of consensus or high-quality data about what works and what doesn’t, and no real high-volume centers with a lot of experience, because these problems are not particularly common in any local community, but in the aggregate they occur in fair numbers and are devastating to the people who struggle with them. I have helped several Slowtwitchers identify qualified surgeons to address these problems over the years (and not just from my group - I try to be unbiased in these things), but I would really like to know more about scope and scale of these kinds of problems at the national level.
My research group has recently started a nonprofit that focuses on patient experience with vascular disease in general, but I am particularly interested in the issues mentioned above. In preparation for more formal work on this topic, I would be grateful to hear from any of you in the Slowtwitch community that have dealt with these problems, particularly with respect to length of process to get a proper diagnosis, inappropriate treatment based on an incorrect diagnosis, access to a treatment plan you found acceptable once you had a proper diagnosis, type and results of treatment, and your satisfaction with the process and the outcome. Ultimately I would like to do this on a large scale as we did with SIPE and USAT, but I would like to develop enough background to make this effort meaningful. Feel free to PM if you don’t want to reply publicly.
Finally, as a shameless plug, our little nonprofit is hosting a 5k to start raising awareness next weekend. If you are in the Houston area we’d love to have you join us. I have a link posted in the Notices forum, in keeping with Slowtwitch community policy.
Many thanks.
Trey