Mayo Clinic Connect
I was diagnosed with a CVST a year and a half ago. I’ve been doing well, but it is always on my mind. It is quite rare and I’m interested in hearing stories from anyone who has been through something similar.
Hi I was diagnosed with a large CVST last September. It came as a massive shock as I consider myself to be relatively healthy and young – 23 at the time. Been through 2 CT scans, 1 week of IV Heparin and 7 months of Warfarin. Had my blood tests taken 1 month after coming off Warfarin and they have come back all clear recently 🙂 Was your vision affected at all? I had really bad double vision for 3 months. My vision is still not perfect but am lucky to be alive! It’s great to hear from someone who has had something similar. I think about it every day.
Thanks for your note! I was 35 when I was diagnosed and was otherwise a very healthy person. Like you, all of my blood tests came back normal for any pre-dispositions to blood clotting. I was on oral contraceptives, which they feel may have provoked this. I did not have any issues with vision. My only symptom was a horrible headache that wouldn’t go away for almost 10 days. I finally had an MRI and was admitted to the hospital for just under a week and put on IV Heparin. I was on Warafin for 6 months following that. I have not had any recurrences (going on a year and a half now), but am still a bit concerned. I had a 2nd MRI at the 6 month mark and there was slight improvement, but it was not gone yet. I, too, feel very lucky to be alive and credit great doctors for catching this before brain damage or worse occured. Thanks for writing… Touch base if you have any more questions or if you come across any interesting info on this.
Mayo Clinic has been actively involved in working with the American Heart Association in the development of guidelines regarding your diagnosis. Although the guidelines do not specifically address recurrent CVST, if it would be helpful to you, please see this linked article http://stroke.ahajournals.org/content/42/4/1158.full.
THANK YOU! This is amazing… Much more information than I’ve been able to find on-line. I really appreciate your forwarding this link to me. I printed out all 71 pages to read through tonight.
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