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.
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.
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.
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
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?
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 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.
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...=)
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.
Hi there ,
I am from the uk , had a left transverse venous sinus thrombosis in 2003 .
Took the docs 4 months to find out what was wrong with me .......
Not their fault ..it is very hard to diagnose ..... thought I just had high bp at first as it went through the roof ....
Felt very dizzy , terrible headaches and shooting pains in the head ,could not walk in a straight line !
They did a ct scan first ...found nothing .....I am sure they thought I was making it up .
But then they did a lumber puncture followed by a mri , LP was ok the mri was not ....
It told them I had had a bleed and they needed to find out why and quick , so they did another mri a longer one and then found the clot .
I had been taking tablets for heavy period which later I found out can cause blood clots of this kind , no warnings on the leaflet ....
I was treated with Heparin first then a 7 month course of Warfarin , but still my head was not right , had all sorts of tests over the past few years , have had probs with my vision but they cannot find anything wrong , it still goes cloudy at times but not for long ....
The docs in the National hospital in London think I now have post traumatic mirgraines, due to the brain having a trauma ...the bleed and the blood clot , plus there is scar tissue there as well . Had a Venogram in 2004 and was told about the scar tissue then .
It took a long while to get to the stage I am at now , I work but partime , head is worse if I am very tired and traveling make it worse too but I do fly .
There is a lot of info on the net about it , which is where I got mine from in 2003 as the hospitals had no info on it !
Cannot help feeling that had it been found earlier my out come might have been better , but I cope and do what I can , some days are better than others , one just lives with a headache , did try Amitriptylene got up to 50mg but it did not help .....
I count my blessings each day and know that I am very lucky to be here .
I have a 6yr old with transverse venous thrombosis with increased intracranial pressure of 55mmhg on LP. Signs of chronic mastoiditis. She is on Lovenox and they want to watch wait and see. This thrombectomy thing sounds interesting. She is having headaches and visual disturbances as well. It seems to me a shunt would be in order but they are not wanting to get aggressive. Very concerned because she is so young. Dr. McCallum
currently in the hospital with transverse sinus thrombosis venous infarction hemorage on the right side . i have been here a month as of yesrerday. they don't know what caused it. i did lose the ability to use the left side of my body and have been relerning to walk and move my hand and arm. also going to speach therapy to help repair my brain functioning. i have gotten no answers, i am going to get a spinal tap tommorow which they ay will help the head achs , which are chronic and the double vision. when the head achs stared i called the doctors office and they told me not to come in because H1N1 was going aroud. if headachs are new to you and really bad MAKE your doctor see you!
Hello everyone! Boy am I thrilled to have found this forum. I am a 31 year old female and currently serving in the USAF. Back in March (I was five months pregnant) I started experiencing some strange symptoms while at work. I had vision problems, it was like there was a giant water spot in front of my eyes, especially my left eye. My thinking, hearing, and speaking skills were diminished, I had to think really hard about what people were saying because they didn't make sense to me. I had a hard time thinking about words or even people's names. Names that I knew and used more than a dozen times a day. I went through this for about 45 minutes before I asked a friend of mine if she'd ever experienced this before. She suddenly got real concerned and told me to call the Nurse Hotline. I did and the nurse also got real concerned. She had me lie down on my left side and told me to get someone to call 911. While we were speaking my right hand started to go numb one finger at a time. Anyway, to make that long part of the story shorter, an ambulance came and took me to the hospital. All of my symptoms had disappeared by the time I got to the hospital. They did an MRI and found nothing. I was told that it could have been a couple of different things, but they couldn't find what they were looking for. They said if I had those symptoms again to immediately come into the hospital. Then a month and a half later, I started having the vision problem again. I told my boss and she drove me to the hospital. I started having the thinking and speaking problems again although I'm not sure if they were as bad as the first time. This time they did two MRIs and they found a clot in my brain. I was immediately put on blood thinners. After I was put on blood thinners I started having the vision problems at least once a week. All the other symptoms were gone. About six weeks after I gave birth, they did some tests and it turns out that I have a genetic defect that puts me at a slightly higher risk for blood clots. They told me I could have another MRI in six months. I was originally told I had a superior saggital sinus clot. I had my six month MRI a couple of weeks ago and it turns out it is still there. I was told yesterday that it is a transverse clot, not saggital. Hopefully I'll find out what that means tomorrow when I have my appointment with the neurologist. Okay, now that y'all know my story I was wondering if any of you had experienced my symptoms? I've only had one headache and that was with my second episode. I've only had one migrane in my life and that was over eight years ago. I haven't had any symptoms since the day before my son was born in June. I've been reading everyone else's symptoms and experiences and mine seem completely different. Does anyone have any advice or suggestions to what I should ask the doctor tomorrow? Are there any symptoms I may be having but don't realize? Sorry for the book, but I appreciate any answers, advice, or comments you may have.
Wow, can't believe I found this site! I was just Dx with right transverse sinus clot! 17 years ago I was Dx with M.S.! I believe most of you, if this problem is not rectified, you could possibly be diagnosed with M.S. in the future. All of the posts thus far have discribed symptoms of an M.S. exacerbation, which I myself have experienced over the last 17 years. I too had one very bad migraine about 14 years ago. I encourage all of you to look into the liberation procedure, M.S., as I believe this is the underlying problem that leads to a diagnosis of M.S., The liberation procedure fixes the vein clot, preventing/stopping the problems that you are experiencing. I believe we all are experiencing a buildup of iron toxicity in the gray matter of the brain due to a reflux of blood that has an excess of iron that was trapped in the vein wall. I hope all of you find a way to alleviate your problems, as i believe I have found mine and will be getting the "liberation procedure" june 14th. I encourage you to look into this procedure, Good luck! Patrick McBride
i was diagnosed with massive sagittlas sinus thrombosis extending to my jugular veins six months ago,.. Initially i was mistreated as meningitis, based on my symptoms, until the neurologist suggested MRV,..
I was started on clexane for 2 months and on now im on warfarin daily.. my headache still there, but less.
yesterday, i have repeated my CT-angiogram.. It turns out that the clots is still there,..did not regress at all...
so now, i have to accept to live with coumadin for life,.. forget about all the contact sports and my favourite activities..and. forget about having my own child since i'm not allowed to get pregnant..
hi! I to have a left transverse sinus thrombosis i gave birth to my 4th baby 18 days later i got pains in my ear which i thought was a ear infection i went to the doctor she said she could not find any problem with my ear and gave me some ear spray later that day i collapsed i woke up about 15 minutes later to find i had been very sick i was sweating i was took to hospital i had 2 ct scans and they found my clot straight away i spent 8 days in hospital i had a mri scan and was put on warfarin this was 3 weeks ago now i feel lots better but i have a lot of trouble focusing on things i have to wear my sunglasses all the time when im out side i get white flashes in my eyes like im constaly getting my picture took. Does anyone know if you can fly with this problem? hope everyone gets well soon .....karen......age 31
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.
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.
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.
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.
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.
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
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.
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!!!
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
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 .
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.
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.
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-
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.
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.
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,
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.
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.
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.
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
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.
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
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