Anyone have CVST with symptoms?

Hi Sally 12345 I seem to have dizziness, and emptying my fluids.

Anyone experiencing CEREBRAL VENOUS SINUS THROMBOSIS (CVST) with a blood that won't go away? Current symptoms? Treatment? History?

A blood clot that won't go away...

@jimtv - welcome to Mayo Clinic Connect.

So you could talk with others who've discussed CVST, I moved your post here:

- Anyone have CVST with symptoms? https://connect.mayoclinic.org/discussion/is-anyone-experiencing-th-i-s/

Is CVST a recent diagnosis for you? You also talked about "a blood that won't go away," and I wanted to be sure this is what you meant?

A blood clot that won't go away. April 30, 2026 CVST diagnosis.

@jimtv Yes. same thing. i had two strokes a week a part in february of 2022 after the moderna vaccine and was diagnosed with CVST. still have a blood clot that will stay there permanently unless it decides to move. to risky to try to take it out. i’d love to hear about your situation, how you are, how old you are! i’m jennifer im 53 now, i was 49 when it happened. thought i was invincible! God sat me down and gave me a talking to!! But im beyond blessed. still have a long way to go every day is a battle i would love to have someone to talk to that knows what i am talking about. i am a great listener and would love to hear your opinion on all the things you go through

@jenwesaw73 Thanks of your note, Jennifer. Good to know you are surviving your CVST and I hope it hasn't been too much of an ongoing headache (no pun intended). I'm 73 and my blood clot is large and runs from the torcula (confluence of sinuses) to the superior jugular vein. It's a rare problem where I live in Utah and my doctors are also saying it's probably permanently in place and too risky to try to remove it. I'm seeking a second opinion from the Mayo's Vascular unit and waiting to hear back. Current symptoms are mostly headaches and cranial pressure. No obvious neurological outward symptoms, except for a few new brain "blips" in memory and fatigue. How are you doing? Can you share your journey in terms of ongoing symptoms? You are so young! Were you satisfied with your conversations and treatment with your doctors? Did you use the Mayo Clinic's services? You are the only person I know who has this ongoing condition and I'd given up hope after there were no other responses to my initial inquiry. Thanks for being in touch. Jim

Hi Jim! so nice to here back from you. Hope you’re well up there in Utah. I’m down here in Casa grande Arizona right outside of Phoenix and yes CVST is just as rare here. I just found out that the type of stroke we had only happens to about 3-5 people in a million? I was so stunned by those odds. i figure that’s why it’s so hard to find anyone who experiences the same situation. And even less common for someone to have a lingering clot. Which apparently we both have. Mine is on the left side of the brain that if they try to remove it they will cause more damage than good. Now at first they thought i had Factor five which I don’t. But after a lot of investigation we finally figured out that it was because i received the moderna vaccine. i was an essential worker during the pandemic. i used to run heavy equipment for my career which i absolutely loved! and that morning of the stroke we happened to be revamping a fire station, thank God, so they were able to fly me out.
I still have balance issues. My vision has changed drastically. The headaches are probably my biggest complaints!! But with a lot of physical therapy i feel lucky to be here. Frustrated a lot. honestly. but here. thank you so much for responding

Thanks for the quick response, Jennifer. So glad Factor five isn't an issue for you (and those genetically related to you)! Mine is also on the left side of my brain and it's so bizarre about the Moderna vaccine. I also had the Moderna and at least 3 Moderna boosters. It was a blessing to be in a place where they could fly you out and I'm sorry you've had to transition from a career you loved. My balance is also a bit shaky, but at 73 with a knee replacement, I've had to be careful of balance for awhile. My vision actually improved, which has been bizarre. After 3 months of doctors and endless blood tests, my wife and I are headed to the Grand Caymans tomorrow, then Mexico City for a Cultural Tour and North Africa in December. We're both retired theatre teachers always in search of a new adventure. I'll let you know what the Mayo Clinic in Rochester tells me after looking at 4-months of MRIs and blood tests. This hit me on May 1 this year and I just contacted Mayo last week. I'm off wifi on a cruise the next two weeks but I hope we can connect again later this month. I'm so grateful for your notes and I'd like to hear what kind of physical training has been helpful in relation to your CVST. All best, my new friend.

@jimtv enjoy your travels! wish your wife my best! i’m so happy to have found someone in a similar situation! Live your by life Jim, love your best and and enjoy as best you can i’m so glad I found you! Safe travels! Talk to you when you return I hope your appointments go well. - jen