Transverse sinus Thrombosis

[soremouth]

Two weeks ago the left side of my lip started to lose sensation by wed my face especially near the sinus's and arm started to tingle. After 4.5 days in the hospital they found a blood clot in one of the veins in my brain.  My neurologist gave me the diagnosis Transverse sinus Thrombosis.  I have searched all over the internet and have not found a lot of information on this and it will be about a week until I see my doctor.  Does any one know if there is any complications or information on this kind of clot?  As of now my top left lip is a little tiny numb and tingles when I touch it but its better then my entire left side of my mouth numb.  

[SallyB46]

I was recently diagnosed with right transverse sinus thrombosis.
My initial symptoms were a loud pulsing in my right ear, worse when I was trying to read at night with my neck slightly bent. It would ease if I layed down. I also at this time suffered from numb arms on both sides. Initially I thought I was laying on them, however I would wake lying on my left side with my ride arm numb, so this wasn't the case. Due to the fact the my mother had died when this all started it was all put down to stress, however the pulsatile tinnitus didn't stop .Eventually my doctor sent me for an MRI which showed a 'strong signal' in the right transverse sinus area. After this I then had a MRI with dye and a more intensive look at the right area of my head. At this point I waited and waited for a result which after 4 weeks came back with a diagnosis of right transverse sinus thrombosis. It did mention though that my body had created new veins around this area (I think this is what they call recanalization.)I was told so that they could investigate more that they would send me to Oxford .It is now 5 weeks since I was told this and the Xmas holidays have been rather irritating at times because I have been worried about it all, yet still having to deal with loads of cooking & presents etc .The worst has been having to deal with holiday closing periods in the NHS, short staff and doctors jetting of three weeks before Xmas for their hols. I will try to remember not to get ill over Christmas, in future …..I’m left wondering what the hell is going on. Anyhow New Year now, hopefully most people will be back to work today, and I will be on the phone pushing for my appointment at Oxford. I really hope nothing happens to me before I get there. It all takes so long, and I am feeling so tired and stressed. I must admit I am truly thankful to this forum and all who have taken time to post on it. It has helped me, and been the most informative site that I have found.
SallyB

[Rustym71]

Mine started out with a massive headache and actually made my left eye close. When I made it to the E.R. I got an MRI . I had 2 clots in the right sigmoid sinus. I was given a boat load of pain killer. I was so out of it I did not remember the ambulance ride to the main Hospital. The pain from this was almost deafIng and my wife has to stop so I could throw up on the way in . Migraine  are main issue. Mine was caused due to my body does not process folic acid correctly . I must take extra to have normal blood. It is the homosistien level that must be checked . Having more issues now. I was never told to take aspirin but took baby aspirin just for the heck of it . I stopped when I started taking high blood pressure Meds just to try and stop something . That was a bad idea. Neurologist now has me on 325mg aspirin daily for rest of life. Had Mrv this week to check if I made the clot worse or if still the same . No answer back yet. Bp med is verampamil 120mg 2 times daily. Don't have any idea of any end insight for the headaches. But I know we all must keep the blood thinner than most to have this pass thru. That vein has cerebral fluid and blood going thru it. Neurologist told me I should not have survived and very lucky . Find a good neurologist that will monitor your condition . That is the best I can tell you.

[Rustym71]

I have this from December 1 2009. I have migraine headaches from this. I have been put on a blood pressure med twice a day that has helped with them. I don't have high blood pressure . I have migraine Meds that work which has kept me from E.R. Visits. I have fatigue and the headaches. Mine is attached to the vein and not moving. Was on comudine for 6 months but off. Dr. says has treated folks with this for 20 years. But I have limited blood flow in that vein. Same as all of you the question is the next headache this happening again? Or is this thing going to move and take me out? Strange thing is a person can get a stent in a heart, bit this um operable .

[teresa59]

Hello, Thank you for your information. My father has been very ill for several months now, his health has severly declined in the last 5 months.  He has tremors, he can no longer feed, bath, dress, and now he can no longer walk.  He has had spinal tap to rule out NPH, he has parkinson like symptoms.  Last weekend he had a seizure, went to the ER had CT scan was sent home, and now we have been told he may have Trans Sinus Thrombosis.  It is so scary not knowing what is going on, he has seen two neurosurgeons, and neurologist, plus he regular physician.  My Dad can't even stand with assistance at this time, he has to be transported by ambulance to all his appts.  Does this sound to you like symptoms of this thrombosis?  We are awaiting the MRI from Saturday.  Any infomation may help to give to his Drs.  Thanks Teresa

[Decoda]

Im 26 and was just diagnosed with transverse sinus thrombosis.  I never had any health problems.  I was in so much pain for about two weeks i was told i had a sinus infection.  Then i had a seizure, and was rushed to the er and was told i had a blood clot.  Im scared to death and understand people when they say any pain in there heads scares them,  I want to get better, i want this to all go away.  But i see from many of your post i probly wont.  In Oct im going to see my family in NY  am i going to have a problem??   Thanks, Good luck to all ya!!!

[3dsal]

My husband was diagnosed with Tranverse sinus thrombosis in 2008.  He does have 2 genes that predispose him to getting blood clots therefore he will remain on Warfarin (blood thinners) for the rest of his life.  Here is all the information that i have learned while going to all of his appointments for the last few years.

Blood clots do not go away with warfarin.  Blood thinners are only used so that you do not get more blood clots.  
Once you have a blood clot you are more likely to get more that is why they do blood thinners for months to years after finding clots.
Other diseases can get triggered (auto immune diseases like arthritis etc)
While on blood thinners you want to keep your INR at a theraputic level (2.5-3.0)  ideal is 2.7.  If you get it too high it will increase your chances of hemorrage.
Your blood clot could cause Intercranial Pressure from lack of blood flow.
Intercranial pressure can cause papilledema (swelling of the optic nerves) if the swelling gets bad enough there is a procedure called Optic Nerve sheeth fenestration (poking holes in your optic nerves to release fluid and relieve pressure)  
The longer your nerves stay swollen the more cell damage it will do.  You could go premanently blind.
There are procedures to remove the blood clots (only if you are a candidate) one is Catheter Directed Thrombolytic.  This is done by an Intervention Radiologist.  Brother in law does it and he says it is non invasive.  (there are risks however and catastrophic bleeding is one of them)


If you or your loved one is suffering from a blood clot make sure that if there is any change in symptoms to go into the specialist with out delay.  If you delay premanent damage can be done within weeks or days, time is not on your side, be aggressive and take care of yourself.  You have a serious illness and it could lead to other serious illnesses like
stroke, SAH (subarachnoid hemorrage), more clots, optical deficits etc.  If you are not happ with your specialist get a new one...the only person who will suffer is you if you don't.