On the horizon
We enjoyed sharing information, news, and facts about spinal CSF leak for this year’s international Leak Week, and in the months ahead we’ll have yet more exciting things to share. Here’s just a bit of what’s coming soon!
Next week: an interview with Dr. Amrhein
Many of our medical advisors have exciting publications either currently published or on the horizon that are helping to advance the field. One such paper that was just published last month is Dr. Timothy Amrhein’s paper on the efficacy of epidural blood patching or surgery for people with spinal CSF leak—the first ever systematic review and evidence map performed for spinal CSF leak treatment. Next week, we’ll be sharing a video interview with Dr. Amrhein where we discuss the study and why this kind of research is so important. See the abstract for the paper in our Publication Abstracts on our website, or here.
Next month: Our new clinician education initiative
Several months ago, we conducted a qualitative survey of clinicians as well as patients and their care partners asking where they saw the greatest need for advocacy. The responses yielded one over-arching concern, voiced by nearly every single respondent: The need for more trained medical professionals. While the number of excellent clinicians and centers specializing in spinal CSF leak care has grown significantly in the last ten years, we recognize that spinal CSF leak is still under-recognized and under-diagnosed. Our goal is both to support clinicians and centers in their ongoing work, and to accelerate those efforts. To that end, we are pleased to announce our new Clinician Education Initiative. Under this initiative, clinicians and centers can apply for funding to further their education. The Foundation will be looking to support projects that show the greatest accessibility as well as exponential potential. More info to come!
This summer: a podcast????
Yes! A podcast! We have long been interested in creating an audio space to address the intricacies of living with spinal CSF leak. As patients, we are so often engaged with the challenge of being believed, diagnosed properly, and treated appropriately, there isn’t room for us to discuss our emotional well-being, or even attend to it. And yet our mental health is so important—and, as we see from recent and new studies, incredibly affected by spinal CSF leak. In our new podcast series, “The Territory and the Map,” trauma therapist and spinal CSF leak patient Dr. John Reiman and Spinal CSF Leak Foundation executive director Andi Buchanan will discuss the lived experience of spinal CSF leak, its impact on mental health, and how to navigate our journey. Look for it on Spotify and wherever you get your podcasts this August.