Intracranial Hypotension Symposium 2017

Andrea J. Buchanan is a New York Times bestselling writer. Her memoir about her experience with a spinal CSF leak, 'The Beginning of Everything'. will be published in May 2018 in the UK). Here she discusses the recent Intracranial Hypotension Symposium, which she was able to attend.

So glad I was able to attend the Spontaneous Intracranial Hypotension Symposium hosted by Cedars-Sinai this weekend featuring doctors—and patients—from around the country coming together to share information and new research about this rare condition. I was thrilled to see Dr. Peter Kranz and the team from Duke, where I was successfully treated, and hear their presentations about the ground-breaking work they’re doing; also to meet Dr. Connie Deline, co-founder of the Spinal CSF Leak Foundation, and Dr. Wouter Schievink, a giant in the field.

Patients’ experiences are often left out of the equation, because they are subjective and hard to quantify; and yet this is important data—in some ways perhaps the most important data. Because even the most subjective description of what it’s like to experience symptoms due to treatment or during the recovery process or just from the condition itself is *information*. And information is key, especially in the context of a little-understood disease or condition. It was heartening to see patient information given weight here, whether it was the patient who came to the mic to provide insight to the panel of doctors about a test one physician had characterised as non-invasive and thus not a big deal (which was very much not her experience); or the patient who brought up a concern about fibrin glue patching and the risks of mast cell activation; or, heartbreakingly, the physician who was there as the father of a young patient with SIH who had been treated by many of the doctors present at the conference, representing major medical centres across the country, and asked “What about the people who don’t get better?”

It’s a difficult thing to live with uncertainty. For patients, especially, but also for doctors. The uncomfortable experience of uncertainty is limited when certain elements can be excluded—when the data is only about numbers and outcomes and trends and statistics, and not the messy realities of human lives and the way they often thwart tables of carefully calculated findings. So thanks to Cedars-Sinai, the Spinal CSF Leak foundation, and all the doctors and medical professionals working to understand and refine treatments for this condition, for not excluding the data of the real, complex, individual patients who look to you while they get on with the uncertainty of living.