I too have a transverse and superior sagittal sinus thrombosis, and I too have questions. I was told that the body should absorb the clot 4 months ago, and my latest MRI shows no improvement. I want to know what treatments are widely available and what risks we live with for an untreated thrombosis.
Last week I was diagnosis with transverse sinus thrombsis and feel extreme frustration with the passive approach to what seams to be a serious ailment.
I am with you! I was told by a neurologist to go home and live until I die. What does that mean? I have lived with my clot for a year now. My headaches are not as severe but fatigue and harsh weather trigger headache. I have just come to terms that I will live with this thing, and if it kills me, it kills me. No one has offered any other solutions. I think doctors are afraid of our condition and fear law suits, so they just let us go. I hope you are improving.
I too have transverse sinus thrombosis. I was just in the hospital over New Year's. I have never had any health problems. I too was sent home and told we'll do an MRI in three months. It is a scary thing! I get anxiety over every little pain. Not too sure what to think. And I'm extremely tired! Do any of you have tiredness?
I also a right transverse sinus thrombosis. I am 23 and have no major health problems besides this. My neurologist started me on a heavy dose of blood thinners (warfarin) for 6 months. My blood clot was dut to the nuva ring birthcontrol. I was in ICU for 2 days and on the neuro unit for 4 days back in november 2008. I still have headaches but they aren't severe like they were. I am also always tired which the doctor assured me was a side effect of the blood clot and the blood thinners. I am so sorry for all of you whose doctors don't seem to care but there is hope out there! Try another doctor, mention blood thinners, don't smoke, stay off of birth control that is regulated by hormones, and try to stay active. I wish you all the best of luck and pray you feel better soon!
I don't know about you guys, but I am grateful for this forum and look forward to hearing from all of you. I was told that I will have to take coumadin for the rest of my life. I guess it could be worse. Has anyone been told if there are dangers we face living with these clots? The only thing I was told was that I'd be ok as long as it didn't get any larger. Mine has actually gotten a bit smaller. I got on the trampoline the other day and was pleasently surprised that it didn't hurt to jump. I still have concerns about flying.
I was not aware that the blood thinners or the clot could cause the fatigue. I thought it was just from being in the hospital. How long did it take for your blood clot to dissolve? I have not had mine rechecked yet. I get an MRI in two months. I also found out I have Factor V Leiden mutation. Do any of you have that? That increases my risk for developing clots. I'm told I cannot run or jump or do any strenuous activities. This is frustrating because I was a runner until this happened.
Get a second opinion. I'm serious! I did! Both neurologists told me to carry on with life. My last MRI in April showed some improvement, but it's still there. I feel it. I've had mine for 1-1/2 years now and the trampoline recently is the most daring thing I've done and I had no problem. The thing that bothers me the most is sinus infections. I have one now and I'm miserable. My clot was brought on by chronic sinus infections, so that is a serious problem for me. Again, I was told I should be fine as long as the clot does not get any larger, and they say it won't if I stay on the Coumadin and have sinus infections treated promptly. We can't be afraid to live. I don't know how long it will take for our clots to go away or if they ever will completely. My understanding is that the flow pattern changes but does not stop so we should be in no grave danger. See another doctor.
Hello. I've been researching a sickness with some serious symptoms I've been having for the past five months that no doctor seems to be able to diagnose.
I'm not so sure this is it. I've had mri's and apparently they see nothing wrong, but regardless, I hope to God that you all are okay.
You guys are so brave, I can't imagine what this must feel like.
On a sidenote, if anyone here sees no harm in natural remedies, there's a traditional japanese food called natto promotes healthy blood circulation. (http://japanesefood.about.com/od/bean/a/natto.htm)
I'm sorry that this problem seems to be so largely ignored. I wish I could help more...
- Love, Peace, and Jesus
sorry, just posting some extra info to whats listed above:
supports normal blood pressure
prevents blood clots from forming
dissolves existing blood clots
enhances the body's production of plasmin and other clot-dissolving agents, including urokinase
has anyone been told anything about flying with this condition?
hello there, can i just ask what are the symptoms of sinus thrombosis?
Left untreated, It hurts real bad, and does not ease up with pain killers. When i walked into the emergency room (after 4 days at home taking tylenol and Ibprophen every 2 hours, even throught the night) and they asked me to rate my pain from 1-10 I told them 12 and I was'nt kidding. It will be 2 years in september that I've had mine. I still have it so I guess it's not going anywhere. It starts to bother me when I forget to take a few doses of coumadin. The pain is localized to the area where the clot is. It hurts when I cough or sneeze, but just for a moment. Just enough to let me know it's still there. Mine was missed on a Cat Scan, so get an MRI.
can you describe your headache you have with this? I have a burning on the top of my head and wonder if it is a clot. I went thru several sinus infections back to back so wondering if that caused something else.
Please help me. Tell me more about your symptoms...does it increase if you are riding in a car etc?
Can you tell me where yours hurts when it hurts please. I am so worried mine has developed into this.
At the top, right, towards the back of my head. If I lay my hand on my head right above my ear it would be the area that my palm, just under the fingers would cover. The painful area would compare to perhaps large egg sized. Why haven't you seen a neurologist? Mine was almost missed on cat scan. They confirmed it with MRI.
I go back to my ENT on Monday. No one has suggested an MRI. Can you describe how your felt..Did it burn? Did it stop when you touched it?
Please responsd. How are you doing today?
I would like to join in and give the advice to see a neurologist who does all the examinations, incl. a MRI.
When I saw the neurologist he sent me for an urgent MRI which confirmed the diagnosis of Sinus Thrombosis. It got worse despite of taking oral blood thinners, I was hospitalized last month and since then I have to take injections from Troparine (blood thinner injections) every day, twice a day. It's very important to keep looking for a doctor that takes the symptoms seriously. I get also migraine headaches with vomiting which was what the doc told, is caused by the blood clots. I have 2 blood clots.
I'm glad I found this forum.
Thanks for the comment. Will you share your symptoms that lead you to a neurologist?
Hi!Hi! I was diagnosed back in August 2008. I remember it well. I just had given birth to my 2nd son. I was having headaches all throughout my pregnancy and actually was put on bed rest for high blood pressure and pre-eclampsia. I went to my OB about 6 days after having my son, because my legs were very very swollen and wouldn't go down and I had horrible headaches. She sent me to the hospital to be further evaluated for pre-eclampsia..WELL, the did everything in the book C-Scan, chest x-rays, blood tests, etc. The dr came in and said that I had a blood clot in my brain and pre-eclampsia. I was admitted and immediately was placed on blood thinners..they took me in to get an MRV and also ultrasound in my legs. I also learned that I had severe clots in my legs as well. It's been interesting. I had an MRV in October 2008 and was misinformed and they told me the clot was gone. I just went and had another MVR on August 1, went in last week and was informed..OOPS, I still have the clot, NOW I know why I'm still having my headaches. My hematologist told me my clot may never go away and long term therapy is not an option since the clot is still there. I"m very upset, but have to live with it. I go to pick up my prescription for my headaches..but dang..I am soooo tired..also, the C-Scan does not pick up my clot at all...I have had many of them...My hematologist and Neurologist say it's because of the estrogen in my pregnancy, so far I have no additional clots..Glad found people that can understand what I'm going through...=)
Did you have throbbing headaches and where did it hurt.
Thanks for replying.
yes. I still have throbbing headaches..ususally on the top and in the back of my head, if that makes any sense. The doctor gave me fioricet to control the headaches, although, it's not helping much. I"m going to call him tomorrow and let him know that it's not helping too. My headaches are coming and going, but every day I wake up with my head killing me. It's quite annoying, and I"m scared one day it's going to get worse. They say my blood clots were pregnancy related, but who knows...I hope so.
Transverse sinus thrombosis results from occlusion of a venous sinus and/or cortical vein and is usually caused by a partial thrombus or an extrinsic compression that subsequently progresses to complete occlusion. Once the vein gets occluded, the thrombus may extend to veins draining into the sinus. This results in venous infarction. Patients may have generalized or focal neurologic symptoms and signs. Some of them are- Headache, Nausea, Vomiting and Possible seizures. Treatment consists of administration of anticoagulants, placement of shunt in case of increased intracranial pressure, or surgery. Rapid thrombectomy of an extensive thrombus within the superior sagittal and transverse sinuses using a rheolytic catheter device is a known treatment option. This appears to be a promising treatment option, particularly in those patients who do not respond to other forms of therapy. Please discuss these treatment options with your neurologist. Hope this helps you. Take care and regards!
Doctor, Thank you so much for taking the time to talk to us. As you can see, there tends to be a common theme of poor communication and information between doctors and patients on this subject. Feel free to keep an eye on this forum. It's good to know that there is someone out there that knows what they are talking about on the subject.