![]() ![]() I couldn’t think clearly, I couldn’t remember things. ![]() The me that was “Me” felt very far away, not in charge of myself anymore, and lots of times it felt like I was watching myself go through the motions of functioning from a very far distance. ![]() I explained it to friends at the time as feeling as though I were very, very drunk-I could talk and walk around, the way drunk people can talk and walk around, but it was like “I” wasn’t there. But if I was up more than 10 to 15 minutes at a time, I experienced awful cognitive dysfunction in addition to the constant pain. And of course, I had to be upright sometimes-I have kids, they needed me to do things, I needed to function. At first, it improved when I would lie down, but after a while, any relief I got from being flat was minimal, and so it was just constant, a 24/7 headache that never got better and got much, much worse if I was upright. Just this constant, unrelenting softball-sized slap of pain lurking in the back of my skull, at the base of my head. How were you affected in day-to-day life? ![]() Treating it effectively, or curing it, seemed out of reach. Even when I moved to a different hospital, with a well-respected neurology department and headache center-the physicians there did at least know about spinal CSF leaks in general and had encountered patients with leaks, but they were still only able to try to manage the symptoms. I was surprised that there was no one there who fully recognized what the problem was, let alone how to treat it. I was! Especially because I was being evaluated at a world-renowned research hospital, with highly trained specialists and subspecialists. Were you surprised by the low level of awareness among physicians? A few months later, I had a second blood patch and an infusion treatment for pain at a different hospital before finally being referred to Duke, where I was finally successfully treated in January of 2016. I regained some functionality for a period of weeks, but my headache never went away. Then I was given a lumbar epidural blood patch, which offered some relief, though not complete remission. Luckily, I did not go through with the through-the-face brain surgery he recommended. However, the doctors I saw didn’t have much experience with CSF leaks in general, and no experience at all with spinal CSF leaks, and so it took far longer for me to find the proper treatment.Īt first, I was referred to an ENT (ear, nose, throat surgeon), who assumed I had a cranial leak (despite my lack of any symptoms that would correspond with a skull-based leak). So, I did have a vague possible diagnosis fairly early on-about a month in. The MRI was read by a radiologist, but also by a neuro-ophthalmologist, a colleague of my then-husband’s, who told me he suspected I might have something called a spontaneous CSF leak. When the headache didn’t improve after a few days of the antibiotics, she recommended I have an MRI done. Initially, my primary care doctor thought my headache might be due to a sinus infection, and she prescribed a course of antibiotics. It just never seemed to go away-although eventually I began to notice that it improved slightly when I laid down. It was seemingly constant, for one thing and it was at the base of my skull, on the right side of my head, very concentrated. But about a week after I was over the flu, I still had this lingering headache that seemed different from any other headache I’d ever had. At first, it was hard to know what was going on, since headache was one of my many flu symptoms. I had a really high fever and a terrible cough-in fact, it was a coughing fit during this bout with the flu that was the likely culprit of my leak. The Beginning of Everything is my eleventh book, but before I was published as a writer, I trained as a musician, studying classical piano.Ĭan you share a bit about how your symptoms began and how things went to receive a diagnosis of spinal CSF leak?Įverything started for me with a really bad flu in March of 2015. Would you tell us a bit about your background? This week, Connie Deline, MD, interviewed Andi to learn more about her experience and this new book. This compelling narrative shall no doubt elevate the awareness and understanding of this underdiagnosed yet treatable disorder, while validating the often trivialized suffering of so many others afflicted. She leads us through her diagnostic and treatment journey, then through her inspiring recovery. She chronicles her experience with a spinal cerebrospinal fluid (CSF) leak that abruptly derailed her ability to function and to think normally. Buchanan is a New York Times bestselling author whose latest book is THE BEGINNING OF EVERYTHING. ![]()
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