Diagnosed with Cerebral Venous Sinus Thrombosis (CVST)

My dizziness is pretty bad most days. I have really bad pain in my head when bending forwarding. The headaches are still brutal. I have constant whooshing sounds in my ear and feel off. Hoping for some relief soon. I’m now being told I have super imposed Stenosis in my brain that is causing intercranial hypertension due to the lack of blood flow.

Long overdue update.

Turns out that, on angiography, I do have a bit of a cobweb of dural AV fistulae, branching to and fro roughly from the right oropharynx to the back of the ole brain. Did the first embo in Jan. Was a good 6h in the attempt to gain enough arterial access (the anatomy of my medial meningeal artery, which is often more ideal for access to fistulae of this, does a kind of 'swoop down' versus an arching path toward the top of my head). That makes this particular entry quite the risk as it's current location very likely abuts a cranial nerve. So all we got out of that 6 hours (and a helluva post op headache) was a roughtly a middle third of the fistulae embolized, leaving 2 remaining segments, one toward the region where my right frontal sinuses would be (I"m a 5%'er - born w/out them 0 I'm not terribly worried about this one).

Good news after that procedure is that the PT was taken care of, and some of my focal issues, headaches, and nausea improved to a large degree.

In a second procedure in March, we decided to try and use a venous approach to coil embolize the more posterior junk that is more of the concern here. The reason is to stabilize the thrombosis in the transverse sinus and keep it from creeping toward the superior sagittal sinus (that outcome wouldn't be a cause for celebration). My neurovascular doc was kinda disappointed with it as the coils didn't appear to seal up blood flow from the fistulae located there as much as he had hoped.

Good news there is, at least I was symptomatically stable and we'd just have to wait and see if the posterior fistulae would just shrivel up and go poof. So we've taken a break from surgery, thankfully. A couple of weeks ago I was cleared to start jiu jitsu again, within reason (given I only have left side dominant drainage now - and the thrombosis is here to stay - I don't really have any redundancy in case I were to get caught in a choke - so tapping out before we really get there is the right answer).

We're resuming appts at the end of Aug, Another diagnostic angio soon to follow and see what next steps look like.

Today has been a bit messy as I've been having a bit of a 'brain zap-a-thon', followed by some dizziness (kinda prompted me to update my post in the hopes something in it may be useful to someone else). I've restarted Diamox - still remain on the Eliquis. Remaining hydrated, continuing exercise - may take a day off jiu jitsu tomorrow if I feel like today. Keeping a close eye on it and gave the fam a little heads up in case they see me in a rather absurd stated. Will see what new and interesting adventures tomorrow brings.

More to come - you all take care of yourselves and each other.

Hello, I was diagnosed with CVST seven months ago. I had a sinus and ear infection and it turns out, bacterial meningitis. Doctors think one of those infections caused the blood clot to for in my brain. I would say I've made a full recovery minus my vision problems that persist. I have dark spots in each eye that I'm told are permanent, but one eye seems to do an adequate job of picking up what the other can't, it is at least manageable. What is increasingly difficult to manage is the fog I see through. I've tried to research this but haven't had much luck, it seems to be a result of the optic neuritis suffered due to the CVST. In full light, like mid-day, I can't see vibrant colors, it looks as though everything I see has been painted over with white. The more objects there are in sight, the more everything blends together. It's bad enough that I don't feel comfortable driving, even though my Opthalmologist cleared me to do so. My dad knows a lady who went through the same thing and she said the "fog" lifted after about a year and she got back to a semblance of normalcy. I was just curious to see if anyone else experienced this and if they had any luck with it getting better, as everyone knows, getting answers regarding CVST are exceedingly difficult. Thank you all for your stories.

Hello. I had a cvst in May 2023 after having a TIA in July of 2021. I also carry the Factor V Leiden blood clotting mutation, which was finally caught while in a coma for 3 days in May with the cvst. If you are white and of European decent please make your provider check you for that! I had no idea about my European decent, but if you've had a TIA or any kind of stroke, you need to be checked for that. It truly is a life saver. They let that slip through the cracks. My major problem is that my new neurologist swears a cvst is not a stroke. She is approx. 60, and I'm thinking she hasn't caught up to knowing enough about cvst. No, no problem with her age if she knew what she was doing. BTW, I am also 60. It really scares me to be honest. She also said she didn''t see brain damage on my scans when two minutes before that her assistant said they couldn't pull them up on the system. I already know there is damage. Even before the cvst/stroke, from severe migraines I suffered for decades. A previous neurologist showed my scans and slides to me showing the migraine damage. I almost lost my second son during pregnancy, which is now known to result from the Factor V blood clotting problem. Why doesn't this neurologist know this? I can't trust her knowing she's not going to treat me for what it is. I asked her why I still have problems with focusing and confusion, cold sweats, constant memory issues, weakness in my left hand and a problem with putting my left foot first, having to read a sentence over and over again to comprehend, etc, Her response was she didn't know and by her actions and responses, she certainly wasn't concerned about it. She was going to send me home not knowing any of these things until I brought up a skin condition that I have. My blood cells and skin cells clot and cause redness and a difference in texture. A dermotologist diagnosed that almost 10 years ago and told me its from blood cells and skin cells clotting, but that he had never seen it so badly spread. So i ask her why that's still happening when I am on blood thinners. Honestly, I knew she had no idea what I was talking about. Long story short, I can't trust a neurologist that doesn't know what she's dealing with. I don't know what to do. I know this was a stroke. I've spent countless hours doing research on this. I can't work at this point, so I have the time to do so. No. I don't have a medical degree, but I know what I read from outstanding medical organizations, institutions and universities. My daughter's cancer specialist from a groundbreaking university told me when I had the cvst to be sure to get a Doctor that treats it as a stroke and does whatever is necessary. He told me it is extremely important. He warned me ahead of time in essence, but I had no idea it would come to this. Is anyone else having problems with being treated for what our problems actually are after going through this? And to tell me she has no idea why I have these symptoms, and to move on at that point, is totally unacceptable. My whole life has been turned upside down. My husband has to call home from work to make sure I take my meds, and she has no idea and wasn't concerned. Medication that I need to stay alive, and I need reminded. I feel like I'm fighting a losing battle.

Hello there. I also have problems with my eyesight. I have difficulty with focusing on objects and being able to identify what they are at times. Not always, but sometimes. And also with things being blurry. I don't know why, but only sometimes. And there are too many days that I can't even drive due to that. It drives me nuts. I also have problems with cold sweats and still my memory too after 5 months. But if you are caucasian please get a test for Factor V Leiden blood clotting disorder. They discovered I have that mutation that causes blood to clot easily when I was in a coma from the cvst. And that was even after a TIA in 2021.

Hello there I just read your post, and I am hoping you can help me. I saw a neurologist today as followup for a cvst. She swears a cvst is not a stroke. I know what we have is rare, but why doesn't this neurologist know this? I battle every single day with confusion, lack of memory, cold sweats, headaches, and not being able to find words as I am talking. She said she had no idea why I have these issues and didn't plan on taking it any further than that. I know it could be much worse, but it's so overwhelming. Why would this so called specialist say this? Other than she really doesn't know her job. Why is she practicing neurology medicine when she doesn't know the differences in strokes? Its very scary. Now i don't know what to do. I need care, but how many neurologists are out there that dismiss their patients concerns like this? I need someone that I can depend on. I don't want my butt kissed, but I truly need someone to pay attention. Thank you.

I was diagnosed with CVST at age 36, in 2021. I had no seizure or swelling, only a headache and neck pain on the left side for 8 days. When I started seeing fireworks I went to the ER where they found the large clot. All blood tests and heart tests were clear. No cancers, no underlying factors. After all the tests, the Coumadin, Plavix, the whole bit, they’ve now removed me from Plavix and moved to a baby aspirin daily. I am beginning to have some similar symptoms, like neck pain, and some headaches here and there, what are the odds of getting another CVST in the same place?

So I am also about your age, 20yrs of BJJ , also a interventional radiology/neuroradiology RN. last 18months developed several acute (COVID) and chronic CVT, resolved with Eliqiuis and recently redeveloped CVT again. I been spending hours looking at my MRI/CT images, I see evidence that I have had CVT years in the past in 2-3 areas and now they are small, abnormally, vascularized SOL , looks like old clot thats fibrosed . That occupy near a sinus or where a superficial cortical vein would have been. Which obviously puts you at higher risk for repeat thrombosis. Noticed L optic nerve sheath enhancement and slight L optic nerve enlargement compared to right on a MRI years before all of this. (small L jugular foramen) so that side is the trouble side for me. I realized that their is a likely correlation between repeated chokes over years and CVT. especially cause I made mastering choke escapes my speciality so I let the chokes get super deep to battle test my escapes but that was also creating repeated moments of cerebral venous pressure/ venous stasis several thousand times over 20yrs. I would be a interesting study. Your case sounds like you had some pre existing AV anomalies, but I think you probably could appreciate that a correlation might exist. Old MRI pic posted

Hi am am now 42 years old I was less than a month from my 40th birthday when my husband took me to the er for the top hospital in our state for what we thought was an infection from a horrible oral surgery. There er doc didn’t spend 15 mins and gave me an antibiotic and sent me home. I couldn’t take it, the pain in my head my face my entire right side, loss of memory, confusion, vision problems, and the list continued. I begged him not to take me home so he took me to a different hospital different affiliation where at least this for said let’s run a ct scan. A bit latter I was diagnosed with 3 blood clots in my transverse and sigmoid sinus as well as an almost completely occluded internal jugular vein on the right side. I was rushed back via ambulance to the original hospital who turned me away. All my blood work is abnormal I have huge red blood cells that don’t carry enough oxygen have developed empty sella, compression of the optic nerve, remain in pain all the time with no treatment. I have loss of memory, confusion, the inability to do things I used to do all the time. I now have heart problems, nodules on my right lung. Protein in my urine, anemia, gastroparisis, a staph infection in my sinus and the list goes on. With no answers. Most recently in November they performed an angiogram to check why my tinnitus is so bad and the performing dr injured my radial artery as well as a vein nearby. Still no answers as to why. Had a positive Ana and was told it wasn’t lupus even thou I had previous been diagnosed with discoid lupus in my scalp via biopsy. I have been told I am on blood thinner the rest of my life as my one large blood clot (it was all only one not three) will never go away. I have no diagnosis for any of my other problems and just get passed from dr to dr to dr with no answers or help or relief. I continue to get worse and worse I have begged for help and get nothing. I’m dismissed by most drs, others have altered my chart to suite themselves and write flat out lies and still I can’t get a diagnosis medicine or help. I have no ability to function and miss watching my kids grow up I fall all the time lose my balance have horrible tremors, horrible adema last attack I gained over forty pounds for six months. No dr has pursued anything and just says maybe ask ???? Some other dr. I’ve been all over my state to the three top hospital centers in the state and have not gotten anywhere but worse and made to feel crazy and insignificant. I just wish one dr would step up and help. My husband and I continue to search for answers but 3 years on July 27 and I have gained so many more medical problems with no relief from the beginning. My goal is to get care where I can function and start a support group for women and medical gaslighting it is a horrible thing. I ask myself daily why is my life so insignificant to each of these drs how could they be a dr and not want to help?

I sympathize with each of you who have this disease as well as the others that come along or can come along. I hope you are able to get the proper treatment and care. I have watched my children fade away they were my world now I can’t even hardly get them to see me I have lost everything in losing them. My life is miserable and still I try and find answers and get no where but worse.