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Anyone have CVST with symptoms?
Stroke & Cerebrovascular Diseases | Last Active: 6 days ago | Replies (14)Comment receiving replies
@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
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@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