Carroll to the possibility that a cerebral spinal fluid leak could be causing my symptoms: Several clues tipped off both my autonomic specialist and Dr. For this reason, if a leak is suspected, it is worth looking into because, unlike most everything else in ME/CFS, there is a fairly simple and effective fix for it.
People with this condition report getting a new lease on life after a successful patch. Carroll to catch and diagnose because the symptoms, such as fatigue, nausea, and postural orthostatic tachycardia syndrome (POTS), are non-specific and thus overlap with other conditions.Ĭarroll told me stories of people who spent years suffering with an ME/CFS or POTS diagnosis only to go on to recover with a simple blood patch, a surgical procedure that uses your own blood to close holes in the dura. Although abrupt leaks are often spotted by doctors because they cause characteristic orthostatic headaches (headaches that arise or worsen upon standing), spontaneous leaks are often much harder to detect and require a specialist like Dr. Spinal leaks can be caused by an abrupt event, such as whiplash or a spinal tap, or can be spontaneous, which is often the case for people with hEDS. I have ME/CFS and hypermobile Ehler-Danlos Syndrome (hEDS) and was referred to him by my autonomic specialist at Stanford because my orthostatic intolerance (OI) picture is a bit muddy and because hEDS, a connective tissue disease, is a risk factor and can cause aneurysms and spontaneous leaks from the dural sac (the tough outermost membrane of the spinal cord and brain).Īnother possible diagnosis arises for Caroline – cerebral spinal fluid leaks…
Cerebrospinal fluid leak causes series#
He spent 1.5 hours with me and was very thorough, asking me a series of detailed questions he uses to assess patients for possible CSF leaks (see below). Ian Carroll, an expert in cerebral spinal fluid (CSF) leaks from Stanford University, for the first time recently. Now Caroline brings to our attention a new one – cerebral spinal fluid leaks. From fibromyalgia to Ehlers-Danlos syndromes to postural orthostatic tachycardia syndrome (POTS) to mast cell activation syndrome (MAST) to intracranial hypertension to mold sensitivity (and more), the number of alternate or comorbid diagnoses associated with ME/CFS is growing. Caroline returns with a not uncommon story of a complicated chronic fatigue syndrome (ME/CFS) diagnosis.
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