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.  

[DBRHETT]

I got a sever ice cream headache on the right side, problem is it didn't go away. After 4 weeks of antibiotics, prednisone, and finally gabapentin I got an MRI it was lateral venous thrombosis. A long *** big clot in the right side of my brain. Luckily it is in the vein because if it was arterial you are screwed. I am writing this from a hospital bed at UCLA Medical facility in Santa Monica. Checked in this morning have had multiple MRIs and a CT scan and now getting intravenous heparin to keep it from growing. Heparin is the safest of the blood thinners and although along with the other blood thinners does not dissolve the clot it helps the body do so.
So apparently there are two solutions. One: IV Heparin for 2 days in the hospital and then go home with oral blood thinners to take for at least 6 months and hope the body is dissolving the clot. Two: Surgical drip of fibrinolytic drops onto the clot via inserted catheter. I can't say anything definitive as I am at the beginning of my journey with this problem. The Gabapentin works great to relieve the painful headache symptoms. 300mg 1-3x/day as needed. As one of my best friends is in a natural health pharmacy we are working up a protocol for when I get out and go home.  
BTW. Don't take Nattokinase with the blood thinning medication as it will thin the blood too much. Serrapeptidase is better. My friend mentioned that oddly enough gallbladder problems are related to blood clotting. So flush the GB. Remember to let the body go slow in dissolving the clot as you do not want it to break off into chunks and create havoc downstream. Clots apparently grow where there is damage and build up like plaques. Keep your arteries healed with Vit. C, Bioflavanoids, Proline and Lysine.

[Janmeggitt]

Hi
I have a transverse and sagital sinus thrombosis which was treated with 6 months of Warfarin. I've just had a repeat MRI and MR scan and I'm waiting for my results. I don't think the results are good as I have been told that I must carry on Warfarin ? I haven't had a consultation yet to discuss the results, but I'm worried about what the means for me long term?
Any ideas based on your experience
Thanks in advance

[jewelbug5614]

I am still following.  I, like several others, had a delayed diagnosis of the blood clot and have been told it has healed after 6 months of blood thinners.  I still feel terrible.  I have blood pressure issues, dizziness/fainting, tinnitus, daily migraine headaches, facial numbness, TMJ issues, cognitive difficulties, weight loss, etc.  I am hoping to locate a doctor who can help with my next phase of recovery.  I am a single mother, 38-years-old and need to work to support my children.

[Sherry7007]

Anyone still following the communication on this site?

[pouihi]

Hi, I'm 28 and I started having a strong headache that lasted for 4 days until I experienced a severe headache as if my head exploded while I went down to pick something up, I went to the ER, initially they did blood tests and ct scan, and they detected nothing until a neurologist detected venous engorgement in my eyes due to increased intracranial pressure, then they did an mri, and afterwards an angiography and that's when they detected a cvt of the transverse and sigmoid sinuses (later known with extension to the jugular). My biggest fear at the time was that the clot could migrate to another part of my body that could do more damage.
I stayed there for 2 weeks and they had me on lovenox, analgesics and diuretics, later we started the warfarin treatment. This was all on April and until recently I still had headaches, but I think I feel better now but I find it weird not to have done another mri already.
I have been lucky with the warfarin because my INR is always between 2 and 3.
I'm supposed to do the treatment until it has been 6 months, and then I'll go back to Lovenox so they can test me for what is the origin.
I'm hoping it was the birth control pill because other result could mean a treatment for life.
Best wishes to all

[JMaba]

Hi. After 9 months of headaches, an MRI and MRA, I got an MRV yesterday which showed the transverse sinus thrombosis. Luckily, besides headaches, I have no other symptoms. My doctor put me on Acetazolamide (Diamox). Anyone have success with this?  l also had a blood test to see if I have a pre-disposition to clotting. Anyone have any doctor recommendations in Atlanta, GA? Any advise is appreciated. Thanks.

[ajbruno]

You need to have a MRV with and without contrast.  CT scan didn't show anything on mine either.  Hope they put you on blood thinners.  Do you have intercranial hypertension as well?  They are often related.

[jparamotx]

Hi! I was given an MRI w/contrast and was diagnosed with thrombosis of left transverse sinus and about 2 weeks later they gave me a CT Scan and they say that the scan found nothing. How can that be. Which test is accurate and how do you know? Please help I'm very desperate.

[Sassygirl272001]

I do too!  I had superior sagittal Venus thrombosis and bilateral transverse Venus thrombosis. It felt like I was hit in the head with a hammer. The 1st and 2nd trip to the ER, misdiagnosed it as a migraine and then meningitis. After a week in the hospital and nothing growing out confirming meningitis they sent me home. After 28 I had constant headaches and double vision. I went to a different hosp and the found the clot and started Coumadin and Lovinox and Diamox. It's been 5 years and I still have memory problems. Thank goodness my sight is finally back to normal! I would like to go back on hormones but they tell me I would have to stay on th Coumadin. I don't want to but I just can't deal with all the hot flashes and night sweats. Not to mention the weight gain,

[aarriaga2404]

I was recently diagnosed with a lateral sinus venous thrombosis on the left side of my brain. I can't imagine not having a supportive doctor. I wound up in the ER for blurry vision and headache, they did a spinal tap, MRI, MRA and it showed nothing. I followed up with Neurology and he ordered a MRV, he said it was a long shot but worth checking into. It showed the thrombosis. He started me on levonox and is monitoring me carefully, including giving me his personal cell # and calling me daily. Had he not thought to order the MRV i would have had a diagnosis of migraine & probably have stroked in the near future. I will be on Lovenox injections 2 x a day for 3 months. I suggest to anyone with bad headaches demand a MRI, MRV, MRA, most importantly the MRV as mine didn't show up on the MRI or MRA. keep searching for a different, supportive doctor who cares about you.

[ameliejune]

do you have cavernous  sinus thrombosis? i was diagnosed with it recently,and the symptoms that i have is sharp left headache,pain behind my left eye,swollen left eye and there is redness too.i stayed in the hospital and they started me on heparin therapy and iam just wondering why doctord did not give me strong antibiotics ,according to research the main cause of sinus thrombosis at times is a sinus infection. I had mri,angiogram and digital subtraction angiography and i have a left tranverse arteriovenous fistula ,and it's a question mark if i have the cavernous arteriovenous fistula as why my left eye protrude,and it was congested and now i suffered a retinal hemorrhage,ending with partial loss of my left eyesight.

[JennyLem]

I am 29 and have been sick since July 2009. I was originally put off by doctors telling me that the headaches were from stress over my recent break up, and that the bump in the back if my head was muscular. I had horrible fatigue and joint pain along with the debilitating headaches. After begging for a Lyme disease test for weeks from my primary doctor, I ended up getting one at the clinic. I also had some random issues occurring. O was finally diagnosed with and treated for Lyme. After this, a bout with Bells Palsy, a spinal tap, a week hospital stay for a DVT, and several pulmonary embily, I got a second opinion on the headaches. On December 18th, 2010, I was diagnosed with a deep sinus thrombosis. The treatment has been blood thinners and monitoring my headaches. It has been super frustrating and I feel stuck. Two and a half years with this pain is getting OLD! Anybody have a good doctor???
-Jenny - MASS-

[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.

[subsea]

i have a partner of 23 who was diiagnosed with transverse sinus thrombosis and is on  13 diffrent medications and still suffers from severe headaches and she feels no one is listening to her can you help

[bgraphic4]

I am a 48 yr old Female. I started out with severe headaches because of an ear infection, that turned into a massive staph infection that went postal and that spread through my blood stream into my lungs, spine and head. I had Meningitis and pnuemonia and an Mastiodectomy I was in the ICU for 10 days and a step down room for 4 before I could go home. I now have Thombosis of the right transverse sinus, right sigmoid sinus and right Jugular Bulb. Also, the right side of my face is affected from the staph infection that has partially paralyzied my facial muscles as well as dried out the cornea of my right eye. I have an IV pick line in my left arm where I give myself heavy duty antibiotics twice a day for 1 hour each. This has totally change my lifestyle and was told I couldn't lift anything over the weight of a quart of milk, no bending over, pushing or pulling. Absolutely no tennis nor any kind of sport. I too still have headaches however, not as overwhelming as what I had before treatment. All the MRI's I have had show no changes in these blood clots. Since I have just been recently diagnosed with all this it is a bit undaunting and yeah, I am a bit scared but going through the angry mood also. I am single and live alone. How in the world do you live with out bending over or lifting things. I can feel the pressure when I do these things and sometimes I am dizzy when I stand up form bending over. I try to squat as much as I can but sometimes I forget. It's been 2 months since all this started. How serious are these blood clots? Am I a ticking time bomb???? I have always been a very active person and now I am just tired all the time.

[SelfHelp73]

I have read all of these posts & I would like anyone's input on my issue.  I'm a 37 year old female.  They have not diagnosed me with a blood clot, however, I had multiple MRI's done & finally they sent me for a MRV which showed "2 filling defects present within the left transverse sinus which appear atypical for clot and are more suspicious for phleboliths". They measure 8.3x4.9mm & 6.8x5.2mm.  It shows partial obstruction of the mid left transverse sinus.  The Dr. does not seem concerned about this, but I am having so many of the same issues you all describe.  I was told that the "phleboliths" are basically calcifications or stones.  My main symptom is bad headaches, almost everyday/all day.  I take 3 advil & for about 1-2 hours my headaches feel much better, but then they come on again after that wears off.  I don't want to take more then 3 Advil a day bcuz of the side effects of that, so I just deal with my headaches most of the time.  The weirdest symptom I have is blurry vision that typically is present upon waking up in the morning & lasts for a few hours, then magically disappears.  I've associated this blurry vision with lying down.  The worst 2 cases of blurry visions (double vision occurred too at these times), was right after my MRI's.  It took about 1.5 hours for the MRI & afterwards my vision was so bad I was seeing everything doubled.  Opthamologist said my optic nerve looks great & nothing looks abnormal.  I also have constant tinittis, but have almost become accustomed to that constant ring in my ears, I hardly notice it unless I'm trying to go to sleep or in a quiet room.  I also suffer from Restless Leg Syndrome almost every night.  I have chronic neck pain & stiffness, which for the longest time I figured I was just having tension headaches stemming from my neck.  I just had a lumbar puncture, but everything was normal except for elevated RBC's (which I was told was most likely result of the actual spinal tap procedure).  My Dr. is testing me for MS, but it so far nothing points to that direction (THANKFULLY, bcuz my husband has MS & 2 in the family would be too much for our poor kids).  I have mild disc dissication in my neck, which could explain neck pain, but stiffness?  I, occasionally, get a shooting electrical pain down to the inside of my right wrist upon coughing, breathing deep or yawning...which, I too, associate with my neck disc issues.

Oh yeah, I almost forgot....3 months ago my regular Dr. did general bloodwork & my Kidney levels (eGFR & Creatinine) were elevated. He had me take it again a week later, along with a urinalysis & it came back elevated again & my urinalysis showed I had a UTI.  5 days of antibiotics that was it.  I had NO symptoms of a UTI, so I thought that was strange. One month later I finally called that Dr. & I asked if he should test my kidney function again & so he ordered the lab again.  My levels were still elevated, but no one ever called me from the Dr. office to follow-up or explain if I should be concerned.  They did not do another urinalysis, just the bloodwork.   I do get flank pain right around my left kidney area every once in awhile, but compared to my headaches, that seems to be at the bottom of my priority list.  I know I need to be my own advocate, but it seems like too often we are having to do all the research ourselves..  We should get some sort of commission if we actually find the diagnosis for ourselves:):) haha!

WOW, when I go back and read this, it sounds ridiculous.....it's no wonder why Dr's don't take us seriously... I have so many symptoms, but no answers.  Any advice, feedback or information would be GREATLY appreciated.

[tired73]

I have problems with my memory. I feel that it is related but my doctors do not validate that so I'm not sure.  I think my short term memory was effected.  I remember stuff from awhile back, but I often forget something minutes later.  It's frustrating.

[dgal878]

Sounds like you got typical care and answers.  I am just under 3 years with my clot.  There are times when I think it is gone and then we get a change in barometric pressure and bam, there it is.  Not bad like early on, just enough to let me know it's still there.  What I do experience since this all happened is frequent sudden onset migraines but I have been able to manage them with Excedrine Migraine thank goodness.  To tell you the truth, I don't think my memory is as sharp as it was pre-clot.  I forget things until I'm reminded of them.  I have a lot of "oh yeah, that's right" moments.  I'd like to hear if any of the rest of you are having that problem.  Don't be afraid of life zorky.  We only have one.  Live it.  

[Zorky]

Hi! I was diagnosed with transverse veinous thrombosis on left side the last Friday in may of this year. It all started with a headache I couldn't tolerate. I had been medicating it for close to 2 weeks and it wasn't getting any better. Earlier that month I had seen the dr twice for a severe tonsil/throat infection. It was viral and gone onto infection & was treated with antibiotics. Then the headache arrived. It started dull and moved onto a very odd burning sensation on the top of my head. When I saw the neurologist, he believed it to be a migraine or post viral headache, but ordered immediate mri's to be safe. I had an Mrv, mra, and full brain. I was then diagnosed with dvt. I spent the next 4 days on heparin at.hospital and was sent home on lovenox shots until coumadin level got above 2(inr). In the hopspital I found out I am factor v Leiden (clotting tendency) and was immediatly taken off birth control pills. I have a 4 year old and a 1 year old that I delivered via c- section and feel blessed and also suprised i never clotted during pregnancy or after abdominal surgery. I have not been told I can't have more kids, however I would have to switch from coumadin to lovenox injections. At thus point we aren't sure and need to just wait & take care of the 2 we have.  
I had mrv repeated in 6 weeks & dr reported "no      significant change". The dr explained these clots  often do not go away, but if they do it will most  likely be after 6-12 months on blood thinners. I
was also told I could fly and had no problem doing so.
Right now, I am just waiting & praying. I am tired of headaches. I tried a migraine med(topamax) but it didn't help much & I felt hungover. I have some tingling in arm and leg sometimes and some deep muscle soreness. I am tired too, but tired is relative with 2 little boys. I am not sure, I am hopeful! And trying to cast away my fears.

doing so. My eyes often feel weird, although I have been to an opthamologist & checked out good. I think it may be some sensational loss in the tissue around my eyes.