Patient Education Blog

Sinus and Cerebral Vein Thrombosis

Stephan Moll, MD writes…

Summary

Sinus and cerebral vein clots are uncommon. They can lead to severe headaches, confusion, and stroke-like symptoms. They may lead to bleeding into the surrounding brain tissues. The clot can be triggered by infections of the ear, face, or neck, by estrogen use and pregnancy, and can be caused by inherited and acquired clotting disorders. The diagnosis is, unfortunately, sometimes initially missed by health care professionals, as a plain CT or MRI of the head can be normal. It takes special MRI or CT scans (called MR venogram or CT venogram) to make the diagnosis. Blood thinners (heparins) are typically initially given, even if there is already bleeding into the brain at the site of the clot.  Subsequently, warfarin is given for varying lengths of time, depending on the trigger of the clot: for 3-6 months if there was a clear temporary trigger (infection, estrogens), 6-12 months if the clot was unexplained and no strong clotting disorder has been found, long-term, if a strong clotting disorder is present. A Consensus Statement published for health care professionals on Feb 3rd, 2011 [ref 1] contains a wealth of information and very solid recommendations on diagnosis and treatment – I consider it the gold-standard guideline for management.
 

Normal Anatomy, Terminology

Normally, blood is transported through arteries into the brain, where it delivers oxygen and nutrients. Once the blood has done its job, it collects into small veins (=cerebral veins) that drain into large veins, called sinus veins. The sinus veins lead to the jugular veins in the neck, which carry the blood back to the heart (see image 1 below). For clarification: These sinus veins have nothing in common (except for the name “sinus”) with the sinuses of the face on both sides of the nose and above the eyes which can get infected, leading to sinusitis.

Image 1. Anatomy and terminology of sinus and cerebral veins (image courtesy of Joe Chovan, medical illustrator, Cincinnati, OH)

A blood clot in the veins that drain the blood from the brain is called a sinus or cerebral vein thrombosis (see image 2 below). Other names also in use are:

  • Cerebral venous thrombosis (CVT)
  • Cerebral vein thrombosis
  • Cerebral venous and sinus thrombosis,
  • Cerebral venous sinus thrombosis (CVST)
  • Cerebral sinovenous thrombosis (CSVT)
  • Cerebral vein and dural sinus thrombosis
  • Sinus and cerebral vein thrombosis

The first term is medically probably the simplest and best term to use. However, as many people include the word “sinus vein thrombosis” when talking about these type of clots, my preference at this point is the term “sinus and cerebral vein thrombosis”.

Image 2. Sinus and cerebral vein thrombosis (image courtesy of Joe Chovan, medical illustrator, Cincinnati, OH)

How common is it?

Sinus and cerebral vein thrombosis is an uncommon type of clot. Only about 1,500 people in the U.S. are diagnosed with it per year (compared to nearly a million people every year with deep vein thrombosis and pulmonary embolism, and 150,000 to 300,000 people with strokes).

Why do symptoms occur?

The obstruction of the blood flow from a clot in these veins leads to a back up of blood and increasing blood pressure in the blood vessels just before the obstruction (see image 2 above). This is like water in front of a dam. The increased pressure leads to swelling of part of the brain, which results in headaches; the pressure can damage the brain tissue, leading to stroke-like symptoms. The increased pressure can also lead to rupture of the blood vessel and bleeding into the brain (see image 3 below).

Image 3. Bleeding into brain from sinus vein thrombosis (image courtesy of Joe Chovan, medical illustrator, Cincinnati, OH)

In medical terms this is called “cerebral hemorrhage”. It is like water in a reservoir overflowing into the surroundings or like a ruptured dam. This is referred to as “venous hemorrhagic infarction” or “venous hemorrhagic stroke”. It can lead to further damage of brain tissue. About one-third of patients with sinus and cerebral vein thrombosis have such bleeding.

Symptoms

Symptoms from sinus and cerebral vein clots depend on the location and extension of the clot and vary from patient to patient. The most common symptom is a severe headache, often the worst headache that a patient has ever had. It can be of sudden onset, develop over a few hours, or a few days. Nausea and vomiting may occur, as may blurred vision. A variety of other neurological symptoms can occur: seizures, speech impairment, one-sided numbness and/or weakness of an arm, a leg, or both, confusion, a decreased level of alertness. Symptoms may be exactly what people think of as occurring in a stroke. A very extensive blood clot may lead to loss of consciousness and death.

 

Who develops it? What are the causes?

Sinus and cerebral vein thrombosis may occur in newborns or adults. It can be due to (a) temporary risk factors, and (b) permanent (inherited) ones. In newborns, the most common cause for the clot is an infection. Infection of the inner ear (otitis), the bone behind the ear (mastoiditis), the mouth, face or neck and sinusitis can be triggers. Birth control pill, patch and ring, estrogen replacement therapy, pregnancy and postpartum state, and certain medications (tamoxifen, chemotherapy) also increase the risk, as may cancer. Acquired clotting disorders (antiphospholipid antibodies) or inherited ones (factor V Leiden, prothrombin 20210 mutation, deficiency of protein C, S and antithrombin) are other risk factors. Sometimes, no obvious cause is identified, in spite of an extensive laboratory work-up.

 

How is it diagnosed?

Sinus and cerebral vein thrombosis is easily missed if the correct imaging X-ray study is not done. The appropriate test to do is an MRI venogram (=MRV) or CT venogram (=CTV). If available, the MRV is slightly preferred over CTV [ref 1].  The usual routine CT or MRI, as are often done for evaluation of stroke or bleeds into the head, are often normal. Also, a plain X-ray of the head or skull is not helpful. The health care professional who evaluates the patient with severe headache or neurological symptoms needs to think about sinus and cerebral vein thrombosis, otherwise the diagnosis is easily missed. The health care professional should have an increased level of suspicion that a patient may have a sinus or cerebral vein thrombosis if the patient has (a) the worst headache ever, (b) risk factors for blood clots, such as being on estrogens or progestin contraceptives, being pregnant or having delivered in the preceding 3 months, (c) a personal or family history of blood clots or (d) a known clotting disorder (thrombophilia).

Clotting disorder work-up

In unexplained sinus and cerebral vein thrombosis, work-up for a clotting disorder is appropriate, to look for a strong clotting disorder, that may influence the length of treatment with “blood thinners” (discussed below). An appropriate laboratory work-up in the patient with an unprovoked sinus and cerebral vein thrombosis includes a CBC (=complete blood count), and tests for factor V Leiden, prothrombin 20210 mutation, protein C, S and antithrombin deficiency, and antiphospholipid antibodies (lupus anticoagulant, anticardiolipin antibodies, anti-beta-2-glycoprotein-I antibodies).

 

How is it treated?

Patients with an acute clot are admitted to the hospital. If symptoms are severe, patients will be admitted to a stroke or intensive care unit. The immediate treatment consists of giving “blood thinners” (= anticoagulants). In the first few days these are either heparin into the veins (= intravenously), or injections of low molecular weight heparin (Enoxaparin, Dalteparin, Tinazparin, Lovenox®, Framin®, Innohep®) under the skin (= subcutaneously). The purpose of giving “blood thinners” is to prevent the existing clot(s) from getting bigger and new clots from forming. The body’s own clot-dissolving system then slowly, over weeks and months, works on dissolving the existing clots.

Clot busters (=fibrinolytic drugs) are typically not given, as they may increase the risk of bleeding into the brain. Radiological or surgical procedures with catheters to break up and extract the clot (thrombectomy; endovascular therapy) are done only in severe cases and in patients who get worse despite adequate “blood thinning” therapy. If a patient has bleeding into the brain due to the clot, the routine “blood thinners” are typically still given to prevent new clots from forming. However, the physicians have to pay very close attention that the bleed does not get worse.

Once the patient has been stable for a few days, an oral blood thinner (warfarin; Coumadin®, Jantoven®) is started. The injectable and the oral “blood thinner” need to overlap for at least 5 days AND until the INR is above 2.0. (INR= International Normalized Ratio; this is the measure of how “thin” the blood is and how much warfarin the patient needs to take). The typical target INR is 2.0-3.0. A key question is how long a patient needs to be on warfarin. Solid treatment guidelines have recently been published [ref 1]. The new blood thinner Xarelto® (rivaroxaban) can be considered instead of warfarin.

  • If the clot was associated with a transient risk factor, such as an infection or trauma, a period of 3-6 months is typically sufficient.
  • If strong risk factors suggesting a high risk of recurrent clot are present, long-term warfarin is often chosen.  Strong clotting disorders are: antiphospholipid antibody syndrome, deficiency of protein C, S or antithrombin; 2 abnormal genes for factor V Leiden (=homozygous); two abnormal genes for the prothrombin mutation (=homozygous); one abnormal gene for each of these mutations (double heterozygous).
  • In all other patients with unprovoked clot, a treatment period of 6–12 months is often chosen. This includes patients who only have one abnormal gene for factor V Leiden (i.e. who are heterozygous) or have one abnormal gene for the prothrombin 20210 mutation (i.e. are heterozygous).

The risk of another sinus or cerebral vein thrombosis, once a patient has stopped blood thinners, is relatively low in the person whose first clot was unprovoked and in whom no strong clotting disorder is present: only approximately 1.5 % of patients (one out of 70) will develop another sinus or cerebral vein thrombosis per year [ref 2]. However, patients are also at increased risk to develop other vein clots, mostly deep vein thrombosis (DVT) of the legs and pulmonary embolism (PE) – about 1 in 25 patients will develop such a clot per year [ref 2]. Thus, patients who stop blood thinners need to know the symptoms of DVT and PE and be for the lookout for them, to seek medical attention early if such symptoms occur.

Finding left-over clots (scar tissue, recanalized clots) after a few months of treatment with “blood thinners” typically does NOT influence the decision how long to treat with blood thinners. Therefore, repeating brain imaging studies (MRV or CTV) on a regular basis is not needed, as it does not change management. However, once a decision is made to stop warfarin, a baseline imaging study (MRV or CTV) should be done. The purpose of this is to have a baseline or reference study, in case new symptoms come up in the future. If one has a baseline study for comparison, it is easier to tell new clot from old/previous clot. In approximately 80 % of patients the clots partially or completely dissolve and the veins become patent again, but 20 % of patients will have chronic occlusion of their sinus or cerebral vein(s) that was/were occluded. Clinically this does not seem to matter and there is no correlation between chronic symtpoms and the degree of vessel patency. This is another reason why routine follow-up MRV or CTV Xray studies are not needed.

What complications may arise?

In the acute setting some patients with extensive clot or associated bleed may die. However, the majority of patients recover completely: Almost 80% of patients fully recover, but it may take several weeks or months to get back to normal. Headaches, and seizures may persist for some time. Minor disability (concentration or memory problems) occurs in 6 % of patients (1 of 17 people). Fourteen percent (1 of 7 people) will have a poor outcome, with major neurological deficits.

 

What else do I need to know?

If you have had a sinus and/or cerebral vein thrombosis make sure you understand:

  • What your risk factors were to have developed the clot and whether you have had an appropriate laboratory work-up to look for a clotting disorder;
  • How long you should be treated with warfarin. Make sure your health care professional is aware of the Feb 2011 management consensus statement (available here) – you may want to print it out and provide it to him/her;
  • That you should avoid estrogen therapy or progestin pill or injections in the future; that the Mirena® IUD is probably safe;
  • That it is o.k. for most women to become pregnant in the future, if they want to. However, “blood thinner” therapy should be considered during pregnancy and for several weeks (6-12 weeks) after delivery;
  • That you are at somewhat increased risk for other blood clots, i.e. deep vein thrombosis (DVT) and pulmonary embolism (PE) and should, therefore (1) modify your DVT and PE risk factors (normalize weight, stop smoking, be physically active), (2) know the symptoms of DVT and PE, and (3) get good DVT prophylaxis in future risk situations (major surgery, hospitalization, pregnancy).

Anything my family needs to know?

Your siblings, children and parents are possibly at slightly higher risk for blood clots, because you had a clot. However, no screening of them is needed (MRV or CTV scan, blood work), unless you were found to have a strong inherited clotting disorder. In that case it might be appropriate to consider testing them for the same clotting disorder. However, individualized decisions on testing need to made, as this is a complex issue. This topic is discussed in another ClotConnect blog (available here).

Existing Guidelines

A superb, comprehensive and thoughtful expert summary was published for health care professionals in February 2011 [ref 1]. It gives a wealth of solid recommendations on diagnosis and treatment.

References

  1. Saposnik G et al. Diagnosis and management of cerebral venous thrombosis. A statement for healthcare professionals from the American heart Association/American Stroke Association. Stroke 2011;42: pre-published on the web in February 2011 (available here).
  2. Bruno M et al. Venous Thromboembolic Events After Cerebral Vein Thrombosis. Stroke. 2010;41:1901-1906.


Disclosure: I have no financial conflict of interest relevant to this blog entry. I thank Joe Chovan, professional medical illustrator, Cincinnati, OH,  for creating and providing the images used in this blog.

Last updated: Jan 2nd, 2013

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38 Responses to “Sinus and Cerebral Vein Thrombosis”

  1. Cassie Brown says:

    Can a CVT or CVST resolve on its own without being diagnosed? Can it get better without completely resolving if one is already on Lovenox therapy?

    HX: One yr ago I was pregnant and developed HELLP Syndrome @38 weeks gestation. I was delivered the day it was diagnosed (3rd c/section and 2nd emergency one, this time with general anesthesia). I also have FVL and MTHFR and was already on Lovenox 60mg/2X day. I was in the hosp 4 nights and went home on Sat. On Sun I developed the “worst headache ever”. It was better Mon AM but then started coming back that evening. I went to ER and also had super high BP. They did a CT but it wasn’t a venogram with the dye. They got my BP down with some IV meds and sent me home after about 6 hrs. I stayed on Lovenox postpartum for about 6w. Now a year later, I still have these little twinges in my head sometimes that just feel strange. I also have an area in my neck under my ear and extending down my neck that is sore sometimes.

    • Stephan Moll says:

      Yes, a cerebral venous thrombosis (CVT) can resolve by itself, similar to clots in other vein clots in the body. This resolution occurs within the first 3 months of the clot after it formed. It can happen on or off blood thinners. The majority of patients (85 %) have partial or complete resolution; only 15 % have complete long-term occlusion. However, interestingly, the degree of recanalization (=reopening) of the occluded sinus/veins is not related to long-term symptoms (i.e. patients with complete resolution of clots may have some long-term symptoms, and people with chronically completely occluded sinus/vein may be symptom free). A good publication from 2006 takes referecne to these data [Dentali F et al. Natural history of cerebral vein thrombosis: a systematic review. Blood 2006;108:1129-1134].

      Is it worthwhile to do an MRV in you now to determine whether you had a cerebral vein thrombosis one year ago? Finding no evidence of clot would not mean that you did not have a clot then; finding chronic left-over clot would tell you that you had a clot at some point in the past, but one would very likely not put a person like you back on “blood thinners” now (I acknowledge, however, that I do not know your full history!), as the trigger of the clot (pregnancy and post-partum state) is now gone and such a person would have a very low risk of future clots. Would a previous cerebral vein thrombosis explain your present head and neck symptoms? That I am not able to comment on with the limited medical infomration that can be exchanged through the internet and outside of clinics.

      • Amy says:

        I had/have a very extensive CVT and one of my strange symptoms in the acute phase was a “squishy” feeling at the base of my skull, when pressed, it felt like my eyes were popping out. I had lots of pain in my neck below my ear like you describe. My neurologist did not think much of it but I know it was associated because just days later I developed severe headaches and vomiting leading to my diagnosis. After beginning heparin therapy the skull and neck symptoms went away.

    • Stephan Moll says:

      No. Cerebral venous thrombosis, if it leads to neurological damage, is a hemorrhagic stroke.
      In general, a stroke is a neurological deficit caused by a vascular problem. Strokes can be classified into two major categories:
      1. Ischemic (meaning: lack of blood flow) stroke, caused by interruption of the arterial blood supply;
      2. Hemorrhagic stroke, due to rupture of a blood vessel or an abnormal vascular structure, resulting in bleeding into the brain.
      Nearly 90 % of all strokes are of the first type, 10 % of the second. Cerebral venous thrombosis represents 0.5% to 1% of all strokes and belong into the second category. Mechanism of stroke in cerebral venous thrombosis: Clot in the veins that drain the brain (cerebral and sinus veins) leads to an outflow obstruction, build-up of pressure in the blood vessels in front of the blockage, and then rupture of the vessel and bleeding into the brain.

  2. msmith says:

    How long can I expect to deal with headaches from a cerebral vein thrombosis? I was diagnosed in March and am still taking pain meds. I have a blood disorder, polycythemia familial. I got pregnant and very sick, then they found the clot. I was in a stroke step down unit for a week. I do daily Arixtra (Lovenox) injections. I have just been given a time line of 6-12 months for recovery. Could you give any more specifics?

    • Stephan Moll says:

      Headaches are not uncommon after cerbral vein thrombosis, and they can be severe. Probably the best predictor as to what further improvement to expect is how you personally have done since your clotting event: if you draw a line of how you have improved over the last few months and you continue that line into the future, you may get an idea what further improvement you might expect. However if you have not improved further in the last few months and the line on your graph is flat, i.e. has plateaued, then you may not have further improvement. As you have P. vera, and as high hemoglobin/hematocrit can cause headache (independent of the cerebral vein thrombosis), it is certainly key to make sure that your blood counts are well controlled and in the normal range (good phlebotomy or hydrea treatment).

      • christopher u says:

        i live in a small town and the doctors here dont know alot about my condition, i have extensive dural sinus thrombosis involving the sagittal sinus, left transverse sinus, left sigmoid sinus, and left internal jugular vein . I i was just wondering if it is common to have so many blockages or if it is normal. Any advice would be great as i said i really dont get any answers around here thank you very much….. christopher

      • Stephan Moll says:

        It is not uncommon to have such extensive clots. It is really just one clot that extends through the different areas of the sinus veins, not multiple clots. Clots in other veins, such as DVT in the leg, are also often very extensive / long. As opposed to the extensive clots in veins, blood clots in arteries (causing heart attacks, strokes, or extremity gangrene) are often quite small.

  3. Sarah says:

    My dad was diagnosed over two years ago with severe sinus veinous thrombosis… was on Lovenox for over a year, and is now on Coumadin. He has shown significant improvement over the past two years but still experiences symptoms like headache and vertigo quite often. I agree with Dr. Moll, I think it depends on how severe your case is and the rate at which your body heals and responds to medication. We are two years into the healing process and my dad is still not quite back to “normal.”

    • sradia says:

      It’s exactly a year since my diagnosis and I still have headaches and can’t cope with large social groups and find processing information very difficult. My memory is very poor and will forget what I am trying to say in the middle of a sentence. Is this to be expected? My doctors say I should have been back to normal in 6 to 12 months but I still have a lot of issues but can’t find anyone who is going through the same thing. I would like to know if this is to be expected.

      • Stephan Moll says:

        It is expected. It is not unusual or surprising. About 30 % of people have minor or mild neurological impairment when measured about 1.5 years after the clotting event, 2.9 % moderate impairment, and 2.2 % severe handicap (Ferro JM et al. Prognosis of cerebral vein and dural sinus thrombosis. Stroke 2004;35:664-670). The following has not been scientifically inesigated and proven, but a clinican may say that the best indicator of how much a patient will eventually improve may be a patient’s own improvement curve so far. If it has clearly leveled off, then there may not be further improvement; however, if the patient continues to improve, then extending that curve into the future may give you an idea how much further improvement to expect.

      • sradia says:

        Thank you….you have made me feel ‘normal’. Everyone around me says I should be back to normal and yet I know I’m not the person I was. Everyone’s attitude is that the scans are clear so everythings ok and this is getting me down. I know this is very difficult to quantify as everyone is different. I still get very severe headaches and having read a lot of blogs people have been told they are ‘post traumatic migraines’. Is this a genuine diagnosis or just another label?

      • Stephan Moll says:

        a) Headache: I am not a headache specialist, but I would not call them “post traumatic migraines”. I would call them “headaches after a sinus and cerebral vein thrombosis”.

        b) Disconnect between X-ray studies and symptoms: It is noteworthy that the 2 studies that have looked at clearing (recanalization) of the clot and symptoms found that there was NO correlation between recanalization and clinical outcome (Stolz E et al. Stroke 2004;35:544-547 and Strupp M et al. Cerebral venous thrombosis: correlation between recanalization and clinical outcome. J Neurol 2002;249:1123-1124). This means that patients who have cleared their clot can have symptoms and, vice versa, people who have left-over clot (or chronic changes, chronic scar tissue) may not have any symptoms. I suspect that the damage to the brain tissue was done at the time of the acute clot and the brain just does not recover completely.

      • Amy says:

        I am glad to hear your account. I was diagnosed in March with severe CVST and then some hemorrhaging and seizures. I notice that my brain and sometimes my whole body “buzz” and tremble after too much sensory stimulation. I noticed it after a social event and was surprised because before that I only noticed it after physical exertion. Riding in the car for several hours is exhausting and causes a trembling and buzzing. I wonder if it is because my brain is trying to process all the stimuli rushing by me at 60mph. My neurologist usually says I shouldn’t be having headaches anymore but I have learned from this blog that they are common too. I felt pretty well for about 3 weeks with little trembling and so thought I had past a milestone but then I had a setback and have had a constant headache and trembling for several weeks. I do hope you feel better soon.

      • Amy says:

        I am seeing my neurologist tomorrow and now, hearing your experience, I don’t have to feel crazy when he says I shouldn’t be having headaches.

      • Shell says:

        I too have complications. I was diagnosed in June 2011with Dural Sinus thrombosis and still have so much pressure in my head. I also have a hard time in crowds. I was wondering how you are doing?

  4. shelley hughes says:

    I was diagnosed 30 June with sinus dural thrombosis and was hospitalized for 13 days. Now in recovery, im on warfarin for 6 months. I still have blurred vision and horrible stabbing pains in head and neck. Also the pressure in my head is unbearable at times. Ice packs and showers is all I have for the relief. Is this part of the healing process? I have asked my neuro several times but its like no one wants to answer. Any input would be helpful.

    • Stephan Moll says:

      Headache after cerebral venous thrombosis is common. However, with such severe headache AND with blurred vision one wonders whether the patient has increased pressure in the head/brain as a result of the thrombosis. Such increased pressure is termed intracranial hypertension. Sometimes this can be seen on CT or MRI scan, and presents as a compression of the normal, fluid-filled spaces (=ventricles) in the brain, or as a swelling of one side of the brain where the thrombosis is, with shift of that half of the brain towards the other side (called “midline shift” in medical terms). You should ask your neurologist whether that is present on your scan(s).

      Treatments to be considered for intracranial hypertension are (a) lumbar puncture to measure the pressure in the fluid around the spine and the brain, to see whether a patient has “intracranial hypertension”. If that is present then enough fluid can be taken off to normalize pressure. Sometimes this has to be done repeatedly. And sometimes a shunt has to be placed (lumboperitoneal shunt) that permanently drains the fluid from around the spine and the brain, to normalize the pressure. (b) Steroids may play a role in improving symptoms; (c) the drug “acetazolamide” might help, but has not really been studied well for its efficacy. The drug is a mild diuretic and decreases the production of the fluid around the brain (called cerebrospinal fluid or CSF), thus decreasing intracranial pressure. So, the main question that this patient should probably ask her neurologist is: “Do I have evidence of intracranial hypertension”? And if he/she says “yes”, then: “Would I benefit from an LP (lumbar puncture)? Should I be treated with steroids? What about Acetazolamide?”. And if the neurologist says “I can’t tell whether you have increased intracranial pressure” then an appropriate question would be: “Should I have an LP to find out?”.

  5. Shelley hughes says:

    Thank you. This is good advise and I will ask my neuro these questions. What a great tool this website is.

  6. christopher u says:

    another question for you sorry , i dont have a neurologiest yet long story but, i had traveled to vanderbuilt hospital and did all my testing and lovenox and now take coumadin . I’v been looking around online and and they talk about like stages (acute stage) wich im at; my question is: are there like stages were i would or can get worse? i’ve been taking the coumadin since feb. so like eight months. most days the pain is unbelivable; my other question is before i went to vanderbuilt the doctor here said they might have something they could go up around or through the gron area to the cloted area ,and spay something on the clot its self to make it desolve? Is this safe, dose it work ,and is it recommended…….If not wat is the best way , easiest way to get reed of the clots and get back to being me again , instead of taking six diffrent pills and just winging it or getting by till something dose happen. I was having TIA in the beging of all this and hadnt had any for a long time but been getting lite headed and dizzy a bit the last week or so, not quit sure if its the same feeling az before the TIA’s but just dont feel up to par. So thank you again for your time and any knowlage you can pass my way, i would be most thankful
    ………christopher…………..

    • Stephan Moll says:

      Clot dissolving therapy – tPA clot buster – and catheter removal of clots (mechanical thrombectomy) are only indicated if (a) a patient with a new clot has very severe symptoms (life threatening) or (b) gets significantly worse in spite of being on appropriate blood thinning therapy. Such therapy is typically only given in the acute phase of a clot, i.e. within the first 2 weeks or so. Later on blood clots become firm, and change into chronic scar tissue, which can not be successfully removed with tPA or by mechanical means.

  7. cory says:

    I was recently diagnosed with cerebral sinus thrombosis. I was in the hospital for four days getting an IV of heparin and am now out and getting a daily INR done to determine my warfarin dosage. I will be meeting with my neurologist in a month to discuss my condition. The reason I was diagnosed with this condition was because I developed a persistent headache about 36 hours after completing a half marathon. I am an avid runner and wanted to know if there is a chance I will have to give up running permanently because of this.

  8. neetu shrama says:

    I was recently diagnosed with cerebral venous thrombosis. I was hospitalized for 05 days and getting injections. Now i am taking tablet acitrom 2 mg per day prescribed by neurologist. I get my INR checked in a week and it is between 1.5 and 1.7 . How can INR be maintained between 2.0 to 3.0. I am currently being examined by a medical specialist of military hospital. Should I consult a neurologist or continue to visit a medical specialist.

    • Stephan Moll says:

      1. Getting INR into the therapeutic range: If somebody is on warfarin or a similar drug (such as acenocoumarol = Acotrom) and the INR is below the target range, more drug is needed under the direction of a health care provider, until the INR is in the desired range. 2. What specialist one needs? This depends on the health care system in which a patient lives. However, it seems appropriate for a patient with a cerebral venous thrombosis to see a neurologist, at least once.

  9. Amy says:

    Can you explain the advantages and disadvantages of LMWH therapy vs warfarin usage in a case where long term (lifelong) treatment is necessary after CVST?

    • Stephan Moll says:

      Advantages of low molecular weight heparins (LMWH): (a) predicatable blood thinning effect and, thus, no laboratory monitoring of blood thinning effect needed, (b) no interaction with vitamin K and, thus, no dietary restrictions. Disadvantages of LMWH: (a) once or twice daily injections into the skin, (b) cost, (c) possible osteoporosis (weakening of bones) if taken long-term.

      • Amy says:

        Thank You. What about excess bleeding risks? Any difference between the two? Does anyone do LMWH long term?

      • Stephan Moll says:

        LMWH is the preferred longer-term therapy for patients with cancer and DVT or PE, because LMWH is more effective than warfarin in these patients (bleeding risk is the same between the two treatments). In other patient groups LMWH and warfarin have not been compared head to head and, thus, no scientific comment is possible as to whether one is more effective or more safe than the other. Probably they are similarly effective and safe and, thus, interchangeable.

        Long-term LMWH rather than warfarin is typicaly reserved for the patient who (a) has had a new clot in spite of therapeutic INRs on warfarin, or (b) does not tolerate warfarin for one reason or another (fluctuating INRs, significant fatigue or hair loss, inability to have INR monitored regularly). However, with off-label Pradaxa and Xarelto now available, these new oral drugs might be a more attractive option than injection LMWH in the patient who does not tolerate warfarin. I would likely NOT use these new oral drugs, however, in the patient who has had a new clot on therapeutic warfarin.

      • Amy says:

        Thank you for your help. I am 49 and had an extensive CVST (no precipitator) in March. They found Factor VIII to be very high and now say I have to be on anti-coagulation life-long. I am wondering about my options. INR is prettty stable on coumadin but I am not feeling well at all. I don’t know if it is the coumadin, the Keppra, the brain injury or other.

  10. Shell says:

    I was diagnosed with Dural Sinus Thrombosis in July 2o11 and emailed you on some complications. Its now Jan 2012 and after continued pressure in head the last MRV I was advised the vein has collapsed so surgery cant be done to help the flow. However, my Neuro advised everything is flowing. How dangerous is a collapsed vein?

    • Stephan Moll says:

      It is not dangerous. “Collapsed” probably means scarred. This is the leftover from the clot. The imaging on CT or MRI does not really count or mean much. There are no data to suggest that patients with scarred or leftover or “collapsed” veins have a higher risk of recurrentcerebral vein thrombosis than patients whose clot has completetly cleared and who do not have scar tissue. Thus, I would likely ignore the “collapsed” vein status.

      • Shell says:

        could the scarred vein be why I still have pressure? I dont think im asking the right questions with my neuro. Im off blood thinners now and I do feel better and am taking 325mg aspirin a day. But the pressure at the top of head is so overwhelming at times. And the stabbing sensations in my brain. I figure the stabbing pains are part of the healing part. But the pressure just wont go away. Ice paks and hated vicadin are for the pains but nothing to off set pressure. Any thoughts on the pressure?
        The pressure sometime hits as low as mid breast section and goes up to top of head. So pressure in my chest is there..

      • Stephan Moll says:

        This is beyond my abilities to answer meaningfully via the internet. For the head pressure – a good neurologist or a headache specialist should be able to address this menaingfully. Pressure in the chest? I don’t know how to connect that with cerebral venous thrombosis.

  11. Austin says:

    I just recovered from CVT and I have two questions (thanks for this site, it is awesome) 1) You wrote that ischemia is not a consequence of CVT, but can slightly elevated intracranial pressure cause minor brain damage? 2) Can cognitive impairment show up from CVT in spite of a clear MRI? My doctors said I should be fine because I had no infarction or edema, but I’m having short term memory/ attention problems.

    • Stephan Moll says:

      Even if follow-up MRI or CT are clear, memory/attention problems can be long-term complications after a cerebral vein thrombosis. This is thought to be due to micro-vascular (ischemic) damage. MRI or CT do not pick up such small vessel damage.

  12. Karen says:

    It is so relieving to hear these stories from fellow CVST diagnosed. I was hospitalized December 2010 after the worst headache of my life. I am still experiencing headaches, dizziness, and what I believe to be pulsatile tinnitus. The stroke specialist seemed to reject my persistent symptoms as related to my CVST. Thank-you for sharing!