Sorry to hear about your daughter's condition. The sagittal sinus is a major draining vein of the brain that runs along the middle of the head from front to back. Symptoms from sudden thromboses (clotting) range from headache to motor/sensory loss or speech/cognitive changes +/- seizures depending on how extensive the clot is, its location, and its effect on the brain in terms of causing a stroke. As your doctors have told you, in your daughter's case it does sound as if this was present early on in her life given the amount of collaterals and compensation. Side effects of coumadin include skin reactions (some rather severe, but rare), drug interactions, and bleeding. THere are a number of clotting disorders that could cause this and can be evaluated with a hypercoagulable panel (blood test). Homocysteine should also be checked in the urine and blood. Autoimmune disorders are another possibility such as lupus, but it sounds like this has already been evaluated. Finally, there are specific genetic disorders that lead to abnormalities in clotting factors that are also evaluated by blood tests.



As for support groups, I'm not quite sure if there is one specifically for sagittal sinus thromboses as these are much less common than arterial strokes. BUt you could try contacting the American Heart Assoc (1800 AHA USA 1 or www.amhrt.org) or the Nat'l Stroke Assoc (1800 strokes) for more information regarding strokes in general. For your daughter's sake, consider seeing a stroke specialist for further evaluation and management of her problems. If you are in the Cleveland area, Drs. Furlan and Sila at the CLeveland CLinic are outstanding stroke doctors who are well known in this field. GOod luck.

HERE