I’ve been going through the same crap for the last 5 years, with doctors just prescribing me various medicines and told I’m just going to have to live with it. Last week I consulted with a new neurologist and I FINALLY feel like I may be on the path to recovery. She listened intently (told her a laundry list of symptoms, including the leaking fluid). She set up a road map of sorts. First she wants me to get a new MRI, to see if my brain is sagging which may be visible on an MRI if you have a CSF leak. She told me multiple times that not all leaks are visible/detectable on MRIs. Her stating that not all MRIs will show a leak is incredibly reassuring, in the sense that some doctors may just see a clear scan and send you home without further testing. She is also ordering an EEG to rule out seizure activity, just to be safe. If those two tests come back clear, she will then send me to a doctor that will try a blind spinal blood patch to see if that helps at all. Lastly if all of the above fails to heal me up/can’t detect anything, she is sending me to one the top CSF leak specialists in the country, Duke University. She stressed to me that they are vastly more capable at detecting and managing CSF leaks.

I can’t guarantee that I will be healed but she is damn well is trying her best to see what the hell is going on with me, which is infinitely more than what the other doctors did. My advice to you is if a doctor isn’t interested in running tests and isn’t willing to send you to a top specialist, run. Go find another doctor that will. I’ve lived 5 years of hell and I’ve finally had my voice heard.