Five months ago my 17 y/o daughter woke up with a headache which after CT scans, MRI's, MRA's and an angiogram of the brain she was diagnosed with Sagittal Sinus Thrombosis.
Every doctor who spoke to her made a point of telling her that her brain scans were like those of a patient in a coma. Her brain had a midline shift to the left, her right ventricle was greater than her left, much like an apple is to a grape. Her sagittal sinus was almost completely occluded, and her cortical and septal veins were acutely thrombosed. Her body over the years had compensated with an extensive network of collateral circulation.
The radiologists and neurologists believe this process began while she was in utero, from some unknown vascular insult. Her anticardiolipins are slightly elevated and all other hematological tests have been negative including lupus. There is a high incidence of autoimmune disorders in the family but no immediate clotting disorders. Regardless of the cause of her clotting, the doctors say she will be on Coumadin the rest of her life.
I have found very little information on Sagittal Sinus Thrombosis and its affects on young people. Does anyone know of any current research on this subject? Are there any online support groups? What are the long term effects of Coumadin? Are there any rare disorders that might be causing her clotting? I have so many questions and concerns.
A heartfelt thanks to any information anyone can share or provide.
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.
Sorry to hear of your daughter's troubles. I did a search on Google and there seems to be many, many links. Copy & paste this and you'll see:
I am very sorry to hear of your daughters problems and I wish her the very best. I have a 21 yr. old son who also suffered from the same problem. He had severe headaches and we took him to the er several times and had numerous doctors look at him and several CT Scans and 6 weeks later he suffered a seizure. They said it was caused from a blood clot in the sagittal sinus area. Even though the clot has since been disolved he has suffered two more seizures. They say since he suffered the first seizure it caused scar tissue in the brain and now he will always have to take anti-seizure medication along with coumadin, to prevent more clots, the rest of his life. My question to you is, they told you these clots or clot were present early on in your daughters life and that her right ventricle is larger than the left. Are they saying the clotting caused this to happen? Has she probably always had one side larger than the other? My son at age 5 months had to have a vp shunt put in to drain fluid from his brain. His right ventricle is about double the size of the left and the left is at least double the size of normal. No one has ever suggested that one could have anything to do with the other. I'm sorry for the long comment but I'm just another mother looking for answers. Thank you.
Thanks to everyone for their replies. In response to foradam, the doctors do feel that size of her ventricles were impacted from years of her body trying to compenstate for the chronic clotting that was occuring in her sagittal sinus. Because of the collateral circulation her body grew as a result, and the positioning of her venous system, they feel the clotting process started before she was born. She never had any symptoms until she woke up with a headache 5 months ago. In the hospital they put her on Dilantin as a precaution to prevent seizures, but she hasn't had a seizure and is no longer taking Dilantin.
The doctor who replied to my post brought up an interesting test, that I plan on asking her hematologist if that was one of the tests he had done. The doctor recommended her being tested for homocystine. Researching the internet, I have found information that if homocystine is elevated that can be a risk factor for clotting. What is very interesting, is that if you have tested postive for the genetic mutation of MTHFR (methylene tetrahydrofolate reductase enzme) that can cause an elevation of this homocystine. The hematologist said our daughter was heterozygous for this genetic mutation, meaning she only has one gene for this, and it wasn't a factor in her clotting because you needed to be homozygous, meaning she needed to get the gene from both my husband and myself. I have found research that states people heterozygous for the MTHFR mutation have more thrombotic disease than the average population. Treatment is a daily supplement of folic acid. My husband was just diagnosed with pernicious anemia and has to get B12 shots and folic acid, maybe he passed on this genetic defect. I'm hoping to find out more from the doctors.
It's just scary to realize my child has a major clot in her brain and and I never knew. I'm thankful she hasn't suffered any neurological deficits but no one can predict the future and the impact this clotting disorder will have on her life. Already she has limitations because of the risk of bleeding while on Coumadin.
To foradam: Do the doctors have any idea why your son's sagittal sinus clotted? My daughter's doctors haven't determined the cause for her clotting.
Look into the clotting factor aspect of all this, too. I worked with a very young girl (20) who presented with the same symptom (severe HA and vomiting), was diagnosed with Sagital Thrombosis, and threw a severe clot and died within a week. The only risk factor she had was being on birth control pills. They investigated and she had some sort of factor problem (Factor V? Factor VIII? ) I am sorry I am not sure of the name, but they said it was rare, but having it and being on BCP's put her at great risk. It turns out now that 3 others in her family have the same Factor problem, and are being put on blood thinners.
The answer to your question, no they could not find a reason for his blood clotting. Our doctor said they only find a reason in about 50% of patients. This was not the first blood clot my son had experienced. A year and two 1/2 months ealier he had a life threatening blood clot in his leg and groin. They could not find a reason then either and decided it was due to having had surgery and was bed ridden for a three weeks. He took coumadin for one year. 2 1/2 months after going off coumadin he started having the headaches.
Check out Factor V Leiden. It is a blood clotting disorder. It is hereditary. You are either normal, heterozygote, or homozygote. Hetero means you have 5-10 times greater chance of clotting. Homo is even higher. Many people have this disorder and don't know it. The test for it is only about 9 yrs. old. Most people find out about it after they have a clot, stroke, pulmonary embolism, repeated miscarriages, etc. Hope this helps.
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