Arianna Benedetti shared her thoughts with us about how she plans to participate in this year’s #duradash. Visit her page to see updates on her progress and give your support!
Arianna, 31, began experiencing symptoms of a spinal CSF leak just six months ago and has had several epidural blood patches to treat it. She is still struggling with symptoms but feels that each new week offers improvement over the last.
What are you doing for #duradash?
I’m walking 1-2 miles per day and slowly beginning to practice yoga again. I’ve been practicing yoga for almost 14 years and it is an important part of my life, physical health, and mental health. I have been unable to practice for most of the year, first due to the spinal CSF leak, and then due to limitations after each blood patch. For me, returning to yoga is an important step in feeling normal again. Yoga also may have contributed to my spinal CSF leak, so I am also working to update my practice to focus less on stretching and more on strength and stability.
What to you want people to know about spinal CSF leak?
I want people, especially doctors, to know about spinal CSF leak and SIH like they know about a common cold or a broken bone. In other words, I want there to be more awareness around this condition, around how debilitating it can be, and how it can be treated. A few days after my leak started, I visited the emergency department because of my symptoms. I suspected I had a spinal CSF leak and told the doctor about my concerns. He conducted a brain MRI, but both he and the radiologist missed the brain sag on the imaging and he discharged me even though I couldn’t be upright without severe head pain and vomiting. He wrote on my medical files, “patient has been researching on the internet and thinks something disastrous is happening to her.” My research was correct: something disastrous was happening. I want people and doctors to know enough about spinal CSF leak and SIH so that this never happens to anyone. I want people to know their severe headache might not just be a headache, and I want people to be able to visit a doctor who will believe them and help them get immediate treatment if they do have a spinal CSF leak.
What research on spinal CSF leak do you hope to see in future?
We could benefit from so many different areas of future research! I hope to see more research on the after-effects of blood patches, including rebound intracranial hypertension and its many symptoms, and on post-patch fluctuations in intracranial pressure. I also would like researchers to conduct a meta-analysis (a statistical consolidation of results from multiple studies) on the treatments and outcomes for spinal CSF leaks. Many studies vary on claims around the efficacy of blood patches, and these differences lead to wildly different predictions from doctors. One doctor told me the chances of a blood patch sealing my leak were as low as 25%, while another told me a blood patch and conservative treatment (bedrest) are equally highly effective, in the 70-90% range. The medical world would benefit from a more streamlined understanding of predictions and best practices around spinal CSF leak treatment. I would also love to see more research tracking individuals with sealed spinal CSF leaks over longer periods of time, in order to better understand the associated risks and likelihood of future leaks. I hope, additionally, for better methods to identify spinal CSF leaks consistently and in a non-invasive manner.