9/19/2023 0 Comments Symptoms spinal fluid leakHe’s seen ME/CFS/FM patients resume normal lives after a single blood patch. Severe headaches, pain, fatigue, exercise issues, and cognitive issues can all be diminished significantly or even drop away entirely. The good news is that many CSF leaks can be successfully treated. Through the Looking Glass: Cerebral Spinal Fluid Leaks & Ehlers Danlos Syndrome – an Alternate Reality to ME/CFS? One possible distinguishing symptom may be tinnitus it’s very common in CSF leaks and does not appear to be as common in POTS.Ĭheck out an ME/CFS patient’s description of her appointment with Dr. Think Like A Doctor: Swept Off Her Feet – SolvedĬarroll noted that no one knows how effective a tilt table test is at distinguishing between cerebral spinal fluid leaks and POTS as no studies have been done.Readers clapped themselves on the back for diagnosing the young woman with POTS but her history of back surgery, a car accident, and whiplash led Kerr to believe she probably has a cerebral spinal fluid leak (and is probably still sick.) Kerr believes that one of the medical mysteries purportedly cleared up in the popular New York Times monthly column is an example of another wrong diagnosis. Except for her symptoms (severe headaches, passing out for 10 years), he had nothing to go on: her initial imaging appeared to be negative and an MRI showed no signs of intracranial hypotension, but when he “patched her” she got better. His first referred POTS patient turned out to have a CSF leak. Since his daughter became ill, Carroll’s been having POTS, ME/CFS, EDS, and other patients referred to him at Stanford and he’s found some people with these diagnoses actually have cerebral spinal fluid leaks. In Carroll’s experience misdiagnoses such as ME/CFS, POTS and fibromyalgia are not uncommon They include feeling worse when upright, neck pain, headache, tinnitus, cognitive issues (getting lost driving to familiar places), nausea, and vomiting. The cardinal symptoms of a cerebral spinal fluid (CSF) leak are similar to POTS in fact, Carroll reported that the top eight symptoms are the same. Misdiagnoses of CSF leaks are common and usually include chronic migraines, chronic fatigue syndrome (ME/CFS), fibromyalgia, POTS, Chiari malformation and Tarlov cysts. They’re another in that swarm of diseases (POTS/MCAS/ME-CFS/EDS, FM) which are often unrecognized by doctors, produce similar symptoms, and are often untreated. ![]() They can be disabling, ruin careers and unfortunately, not be diagnosed for decades. Ultimately it was determined she had a spinal fluid leak she received treatment and improved greatly.ĬSF leaks are no joke. She got an otherwise very good workup which, unfortunately, did not measure cerebral spinal fluid protein, including a brain MRI nor spinal imaging. She contacted Stanford, but since her headaches didn’t match the classic post-spinal tap headache picture (they persisted when she was lying down), a CSF leak was not at first suspected. His daughter had a spinal tap-induced cerebral spinal fluid leak. That message was borne out of his own experience. He’s not an expert in ANS issues but he was there to tell the audience that some people with POTS (or misdiagnosed with POTS) may instead have a condition that is treatable. ![]() Carroll, then, is the real deal – he’s a leader in his field. Carroll’s also conducted visiting professorships at a bunch of top medical centers (Johns Hopkins University, Vanderbilt University, Cedar-Sinai Medical Center, and University of California at Davis Medical Center). Plus, Carroll created Stanford’s CSF leak program, AND its Peripheral Nerve Injury Pain Program. Carroll, a headache and pain specialist at Stanford became interested in cerebral spinal fluid leaks when his daughter got one
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