Redefining Chiari I Malformation: Prevalence, Natural History, and Patient/Family Perspectives
Dr. Jennifer Strahle, pediatric neurosurgeon gives a history on where the 5 mm rule came from but, as many Chiari specialists know, not all Chiari's are created equal. Dr. Strahle looked at tonsillar descent from birth through "old age" and asks questions like How common is Chiari? How does Chiari relate to syrinx? How does syrinx related to scoliosis?
An even more pressing question: which symptoms are or are not associated with Chiari and what should surgeons or Chiari-specialists suggest if surgery is not necessarily the answer.
Dr. Strahle and team collected information regarding the patient journey using anonymous online board posts. From these findings, the team found that Chiari patients felt dismissed or symptoms were overlooked that impact their quality of life, patients are often referred to a number of specialists for each symptom with little to no relief, patients found it most helpful too consult with a "Chiari-specialist" regarding their Chiari diagnosis, and unfortunately, physicians are not always certain what is the optimal treatment option for each Chiari patient.
The Redefining Chiari project at Washington University, St. Louis, will include research projects including: "CSF Circulation: Thinking Beyond the CSF Spaces", "Syrinx Natural History", and the "CSSS - Surgically Treated Chiari".
Listen to
Dr. Jarod Roland's lecture from this meeting to hear more about neuroimaging research.
Find out how to get involved with this research at http://chiari.wustl.edu/research.
This lecture was given at St. Louis Children's Hospital on July 15th. (2024)