2024 Spinal CSF Leak: Bridging the Gap Conference
The 2nd Annual Bridging the Gap Conference
Hosted by: Dr. Andrew Callen and the University of Colorado Anschutz Medical Campus in partnership with the Spinal CSF Leak Foundation
Date: November 2-3, 2024
Location: University of Colorado Anschutz Health Sciences Building, Aurora, Colorado, and virtual
Bridging the Gap is an annual conference, held in November at the University of Colorado Anschutz in Aurora, Colorado. This event aims to share collective insights via a diverse cohort of clinicians, researchers and patients, and is aimed at any person interested in spinal CSF leak, be they physicians, patients, caregivers, or the general population. The goal of this conference is to foster a nuanced, patient-centered understanding of the diagnosis and treatment of spinal CSF leak. This event is presented by Dr. Andrew Callen and the University of Colorado Anschutz Medical Campus in partnership with the Spinal CSF Leak Foundation.
This year’s Bridging the Gap conference is entitled “Past, Present, and Future”, and will be discussing all three elements as applied to the field of spinal CSF leak research and treatment.
Transcript of Dr. Andrew Callen's Opening Remarks
Hello and welcome, colleagues, patients, friends, and virtual attendees. My name is Andrew Callen, and I am very honored to be here today as the course director for this year’s Spinal CSF Leak Bridging the Gap Conference.
Before we begin, I really want to express my gratitude to my fellow organizers: Jen McKenzie, Jodi Ettenberg, Dr. Lalani Carlton Jones, and Dr. Marius Birlea. I would also like to thank the Spinal CSF Leak Foundation and the Departments of Neurosurgery, Radiology, and Neurology at the University of Colorado for their invaluable support in making this event possible. I would especially like to thank our many international speakers who have traveled very far to be here today and tomorrow. We are incredibly grateful for your presence.
Last year, we took a major step forward with our inaugural event, bringing together 70 in-person attendees and over 500 virtual participants from across the globe. This year, we’ve grown in both scope and scale, with double the speakers and two full days dedicated to the past, present, and future of spinal CSF leak research and treatment. We have attendees from 32 different countries listening in. We are also fortunate to have speakers from six different countries, each contributing their expertise and experiences to deepen our understanding of this complex condition.
This year, as we reflect on the past, examine the present, and look towards the future, we’re not just charting a course based on what we already know. We are building a roadmap guided by the wisdom and stories of those living with this condition. Our patients are not just recipients of care – they are partners in this journey. Their narratives help shape the questions we ask, the innovations we pursue, and the treatments that we develop.
In thinking about the importance of listening to patients, I’m reminded of two pivotal moments in medical history. The first is the story of Dr. James Lind, an 18th-century physician who revolutionized and discovered the cure for scurvy. Sailors were dying at alarming rates from this mysterious disease, and while many remedies were proposed, none consistently worked. Lind, however, chose to listen carefully to the experiences of these sailors and consider their diet. Through one of the first controlled clinical trials, he discovered that citrus fruits could cure scurvy, transforming the way this disease was treated and saving countless lives.
The second story is that of Dr. Oliver Wendell Holmes Sr., who revolutionized our understanding of childbed fever in the 19th century. At a time when many women died after childbirth, Holmes suspected that physicians themselves were spreading the infection. His observations, based on patients’ accounts and patterns of infection, led him to advocate for better hygiene practices among doctors. Though his ideas were initially resisted, they eventually became accepted, fundamentally changing the way we approach infection control and medicine.
As clinicians, we often seek certainty in data: the imaging results, the lab values, the treatments that have clear, measurable outcomes. Yet the truth is that some of the most profound insights come from what is not immediately measurable – the lived experiences of our patients. These experiences are rich with knowledge that can challenge our assumptions, expand our thinking, and guide us toward more meaningful care. Our task today, and always, is to allow those stories to reshape our understanding of this complex disease in ways that technology alone cannot.
Over the next two days, we have the unique opportunity to break down the traditional barriers between patient and physician. This conference offers us a chance to sit with our patients’ experiences, to listen without the urgency of treatment, and to let these voices influence the future of our practice in a way that is grounded in empathy and mutual respect. I hope that by the end of this conference, each of us feels not just more informed, but transformed. The science will continue to evolve, as it always does, but the way that we approach our patients and their care has the potential to change today.
Thank you all for being here, for your dedication you show to this field, and for your willingness to explore new ways of understanding and treating this condition. I’m looking forward to what promises to be an engaging and enlightening two days.
Each of the following session titles from the second annual Bridging the Gap Conference held on November 2-3, 2024 links out to a separate post with the video of the talk, and the associated transcript. Some sessions also have accompanying slides uploaded to our website.
We hope that these video replays help further our mission of education, advocacy, and raising awareness for all people suffering from intracranial hypotension or spinal CSF leak.
Thank you for joining us at this year’s Bridging the Gap: Past Present and Future.
We hope to see you next year!
Diagnosis: Patient Presentation and Overlapping Syndromes
Challenges in Diagnosis
Myelography: From Consent to Conclusion
Day 1 – Morning Q&A
The Importance of Communication
Epidural Blood and Fibrin Glue Patching
The Cognitive and Emotional Burden of the Spinal CSF Leak Journey
The Evolution of Patient Advocacy and Caregiving
Day 1 – Afternoon Q&A
Honoring Connie Rim
Treatments for The Spectrum of Dural Defects
CSF-Venous Fistulas and Treatments Thereof
Post-Dural Puncture Headache (PDPH)
Day 2 – Morning Q&A
The Imaging Negative SIH Patient: How We Do it
Treatment Considerations and Post-Treatment Care
Day 2 – Closing Q&A
LOCATION
ONLINE: Streaming link to be provided upon registration
IN-PERSON: University of Colorado Anschutz Health Sciences Building, Elliman Conference Center
1890 N Revere Ct Aurora, CO 80045
AGENDA
For a PDF version of this year’s agenda, please see here.
All times in Mountain Time
Note: schedule is subject to change.
DAY 1: SATURDAY, NOVEMBER 2, 2024
Introductions—8:15-8:45 AM
- Welcome address and introduction to the 2024 conference — Dr. Andrew Callen and Jen MacKenzie
- Keynote speaker: Perspectives on a career in spinal CSF leak and the importance of the patient-physician relationship — Dr. Linda Gray
Diagnosis: Patient Presentation and Overlapping Syndromes—8:45-10:00 AM
- Patient talk: Challenges to clinical diagnosis — Dr. Jodi Blaszyk
- Physician talk: Classic presentation of spinal CSF leak symptoms — Dr. Jill Rau
- Physician talk: Atypical presentation of spinal CSF leak symptoms — Dr. Deborah Friedman
- Physician talk: Rethinking the clinical presentation of SIH in CSF-venous fistulas — Dr. Andrew Callen
- Physician talk: Overlapping syndromes in Spinal CSF Leak — Dr. Ilene Ruhoy
☕️ Coffee Break ☕️—10:00-10:10 AM
Challenges in Diagnosis—10:10-10:55 AM
- Patient talk: Perspectives on diagnosis from a physician with a spinal CSF leak — Dr. Tasha Haiduk
- Physician talk: Refining MR protocols and why they are used — Dr. Niklas Lützen
- Physician talk: The diagnosis of SIH, from old to new understandings — Dr. Ian Mark
Myelography: From Consent to Conclusion—10:55-11:55 AM
- Patient talk: the myelography experience from the patient’s point-of-view — Sarah Berry
- Physician talk: DSM: What, when, why, and how? — Dr. Niklas Lützen
- Physician talk: dCTM: What, when, why, and how? — Dr. Lalani Carlton Jones
- Physician talk: Photon Counting CT: What, when, why, and how? — Dr. Ajay Madhavan
Q&A from morning sessions—11:55-12:15 PM
Lunch—12:15-1:00 PM
The Importance of Communication—1:00-1:45 PM
- Patient talk: How to minimize miscommunications when advocating for your care — Aubrey Bolan
- Physician talk: Communicating with patients during their spinal CSF leak journey — Dr. Mark Mamlouk
- Patient talk: Intersectionality and navigating diagnosis — Asia Gibson
Epidural Blood and Fibrin Glue Patching—1:45-2:15 PM
- Physician talk: Patching basics — Dr. Ian Carroll
- Patient talk: The patching experience from the patient’s point-of-view — Kristen Friese
☕️ Coffee Break ☕️—2:15 – 2:25 PM
Addressing The Cognitive and Emotional Burden of the Spinal CSF Leak Journey—2:25-3:10 PM
- Patient talk: Physical and emotional wellbeing while living with a spinal CSF leak — Leah Leavitt
- Physician talk: Palliative care — Dr. Katie Morrison
- Patient talk: Mental health and the emotional toll of missed and mis-diagnosis — Dr. John Reiman
The Evolution of Patient Advocacy and Caregiving—3:10-3:55 PM
- Spinal CSF Leak Foundation 10 year anniversary: the Foundation through the years
- Patient talk: The evolution of patient advocacy in spinal CSF leak — Linda Pohuski
- Patient talk: Caregiving in the context of spinal CSF leak — Darren Jackson
End of day Q&A —3:55-4:25 PM
Honoring Connie Rim—4:25-4:30 PM
DAY 2: SUNDAY, NOVEMBER 3, 2024
Welcome Remarks—8:15-8:25 AM
Treatments for The Spectrum of Dural Defects—8:25-9:10 AM
- Physician talk: Basics of surgery for spinal CSF leaks: What, why, & how? — Dr. Peter Lennarson
- Physician talk: Updates and challenges in spinal CSF leak surgery — Dr. Wouter Schievink
- Patient talk: The surgical experience from the patient’s point-of-view — Jeremy Marks
CSF-Venous Fistulas and Treatments Thereof—9:10-10:25 AM
- Physician talk: CSF-venous fistulas: The known and the unknown — Dr. Peter Kranz
- Physician talk: CSF-venous fistulas: Why or why not to embolize? — Dr. Eike Piechowiak
- Physician talk: CSF-venous fistulas: Why or why not to use glue? — Dr. Mark Mamlouk
- Physician talk: CSF-venous fistulas: Why or why not to surgically repair? — Dr. Vinay Deshmukh
- Patient talk: CSF-venous fistula treatments from the patient’s point-of-view — Laura Tietz, PharmD, RPh
☕️ Coffee Break ☕️—10:25-10:40 AM
Post-Dural Puncture Headache (PDPH)—10:40-11:40 PM
- Physician talk: Iatrogenic spinal CSF leaks: the known and unknown — Dr. Andrew Callen
- Physician talk: Spinal CSF Leaks and pregnancy — Dr. Samantha Petrucci
- Patient talk: Perspectives of PDPH — Julie Schmitz, CRNA, ACNP
- Physician talk: Surgery for PDPH: Blebs and needle holes — Dr. Juergen Beck
Q&A from morning sessions—11:40-12:20 PM
Lunch—12:20-1:20 PM
The Imaging Negative SIH Patient: How We Do it—1:20-2:05 PM
- Physician talk: The imaging negative brain in SIH: What we’ve learned — Dr. Wouter Schievink
- Physician talk: The imaging negative brain in SIH: How I do it — Dr. Peter Kranz
- Physician talk: The imaging negative brain in SIH: How I do it — Dr. Ian Carroll
☕️ Coffee Break ☕️—2:05-2:20 PM
Treatment Considerations and Post-Treatment Care—2:20-3:35 PM
- Physician talk: MCAS, post-viral concerns, hEDS, POTS, & other conditions that may impact spinal CSF leak treatment & healing — Dr. Ilene Ruhoy
- Patient talk: Navigating concurrent conditions while deferring treatment — Jodi Ettenberg
- Physician talk: Rebound intracranial hypertension: what we know (and don’t know) — Dr. Simy Parikh
- Physical therapy in the context of spinal CSF leak — Nicole Frost, BAppSci (Physio) Hons
- Patient talk: Logistics of care and aftercare — Jen MacKenzie
End of Day Round Table and Q&A—3:35-4:20 PM
Closing Remarks—4:20-4:30 PM
SPEAKERS
Prof. Juergen Beck, MD
Sarah Berry, PhD ABD
Jodi Blaszyk, PsyD
Aubrey Bolan
Andrea J. Buchanan
Lalani Carlton Jones, MA (Cantab) MBBS MSc MRCS FRCR
Andrew Callen, MD (Course Director)
Ian Carroll, MD, MS
Connie Deline, MD
Vinay Deshmukh, MD, FACS
Jodi Ettenberg, BCL, LLB
Deborah Friedman, MD, MPH
Kristen Friese
Nicole Frost, BAppSci (Physio) Hons
Asia Gibson
Linda Gray, MD
Tasha Haiduk, MD
Darren Jackson
Peter Kranz, MD
Leah Leavitt
Peter Lennarson, MD
Niklas Lützen, MD
Jen MacKenzie
Ajay Madhavan, MD
Mark Mamlouk, MD
Ian Mark, MD, MSM
Jeremy Marks
Katie Morrison, MD
Simy Parikh, MD
Samantha Petrucci, MD, PhD
Eike Piechowiak, MD
Linda Pohuski
Jill Rau, MPsych, MD, PhD, FRCPC, FAHS
John Reiman, PhD
Ilene Ruhoy, MD, PhD
Wouter Schievink, MD
Julie Schmitz, CRNA, ACNP
Laura Tietz, PharmD, RPh
ACCREDITATION AND DESIGNATION STATEMENT
This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of The University of Colorado School of Medicine and the Spinal CSF Leak Foundation. The University of Colorado School of Medicine is accredited by the ACCME to provide continuing medical education for physicians.
The University of Colorado School of Medicine designates this live activity for a maximum of 14.25 AMA PRA Category 1 Credit(s) ™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
LEARNING OBJECTIVES
- Identify and differentiate between typical and atypical presentations of spinal CSF leaks, enhancing diagnostic accuracy and reducing instances of underdiagnosis and overdiagnosis.
- Analyze the applications and limitations of the Bern score in the radiographic diagnosis of intracranial hypotension, facilitating a rigorous yet nuanced approach to interpreting radiographic results.
- Develop a comprehensive understanding of the available percutaneous and surgical treatment options, including the historical context and recent advancements, to better guide patients in choosing the most appropriate treatment path.
- Implement patient-centric approaches in their practice, utilizing the insights and experiences shared by patients during the conference to foster a more collaborative and empathetic healthcare environment.
- Assess and enhance their communication strategies among all team members, including the neurologist, neuroradiologist, neurosurgeon, and nursing staff, to optimize spinal CSF leak management and improve patient satisfaction and outcomes.
YOUR QUESTIONS
This year, we are offering a means for attendees to submit their questions for our Q&A sessions ahead of time, via a form based on the section topics in the agenda. We will get to as many as we can in the allocated Q&A time slots, but anticipate that volume will exceed the available time and apologize in advance for those questions we may not be able to get to.
In person attendees will be able to ask questions in real time as well. Please submit your questions here.