![]() One leak expert estimates that “slightly less than 100% of patients with spontaneous CSF leaks have an underlying connective tissue disorder.” The dura is made out of connective tissue and patients with HDCT’s have thinner dura mater, that is more susceptible to tears and leaks. Heritable Disorders of Connective Tissues ( HDCT’s) such as Marfan Syndrome, Ehlers-Danlos Syndrome (both classical and hypermobility type), autosomal dominant Polycystic Kidney Disease, and other HDCT’s predispose patients to CSF leaks. There is growing evidence suggesting that a significant number of spontaneous CSF leaks occur as the result of a preexisting weakness in the dura. These leaks are usually ventral (or in front of the spinal cord). Sometimes spontaneous leaks may be associated with some sort of spinal pathologies such as calcified disk material or bone spurs. Spontaneous leaks that occur with minimal or no clear cause.Traumatic injuries such as brachial plexus injuries falls, sports injuries, motor vehicle accidents, roller coaster rides, and other whiplash injuries.Medical procedures (also called iatrogenic leaks) for various diagnostic or therapeutic reasons such as lumbar punctures to collect fluid for analysis if meningitis is suspected, lumbar puncture for injection of contrast (myelography), spinal anesthesia, epidural injections, epidural steroid injections, prior skull base or spinal surgery, CSF shunt over-drainage, prior sinonasal surgery, and chiropractic or other spinal manipulations.Some patients have had unnecessary decompression surgeries when the underlying, sole cause was a leak all along. A leak can cause an acquired Chiari malformation or coexist and complicate an existing congenital Chiari malformation. ![]() To make diagnosis even more complex and elusive, CSF leaks can and do often occur along with any of these disorders and perhaps several simultaneously. Some of those common misdiagnoses are Postural Orthostatic Tachycardia Syndrome (POTS), migraines, sinus headaches, Meniere’s Disease, Chronic Fatigue Syndrome, Parkinson’s Disease (sometimes other neurodegenerative diseases), Fibromyalgia, Ehlers-Danlos Syndrome, Tarlov Cyst, Chiari Malformation, Cervical Spine Disease, cervicogenic headache, tension headache, and Sinusitis. ![]() Many who are leaking are not even aware that they are leaking. Other times, especially (but not always) in the case of chronic leaks, the positional symptoms either lessen or go away altogether, including the headache. Imaging and other tests used to attempt to find leaks are often read as “normal” even when there is a leak present. Approximately 50% of leaks cannot be found on imaging. Rare signs or complications of CSF leaks can include: quadriplegia, dementia (often mimicking Frontotemporal Lobe Dementia), Parkinsonism, other movement disorders, ataxia (unsteady gait), hypersomnolence, stupor, coma, stroke (hemorrhagic or ischemic), and even death.ĬSF leaks are often very hard to locate, if ever. Cranial leak specific symptoms can vary even more and can include: fluid discharge from ears, nose (usually only one side) and to back of throat often reported as salty or metallic tasting, recurring or chronic meningitis, loss of sense of smell, change in hearing or ringing in the ears, and less frequently cognitive changes. Other leak symptoms can include, but are not limited to: nausea, vomiting, neck pain or stiffness, heaviness of head, pain between the shoulder blades, feeling of pressure within the head, changes in hearing (muffled or underwater sensation), tinnitus (ringing, buzzing, or pulsatile), feeling of liquid in the ears, sense of imbalance, sensitivity to light, sensitivity to sound, pain or numbness in the arms, changes in cognition (“ brain fog,” memory loss, or loss of concentration), dizziness or vertigo, scalp sensitivity or tingling sensation within the scalp, visual changes (blurring, double vision, visual field defects), pain behind the eyes or when moving eyes, facial numbness or pain, sinus pressure, temporomandibular joint pain and stiffness, and subdural hematoma. Symptoms often worsen as the day goes on. ![]() This is particularly the case in the chronic (vs acute) phase of CSF leaks, where the “positional” or “orthostatic” characteristic of symptoms may become more constant, lessen, or disappear entirely, including headache. However, not all positional headaches can be attributed to a CSF leak, and not all CSF leak headaches are positional. This is sometimes called a “positional” or “orthostatic” headache. ![]() The main symptom of a CSF leak is a headache that is worse when upright and improves when lying down horizontally. ![]()
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