Cerebral venous sinus thrombosis

[BestAunty]

I had a CVST in November and am just learning what to do and how it’s impacted my life. I’m on blood thinners and it was caused by estrogen. Anyone else in this situation?

[Karenc27]

Hi there I too had a cvst. I was 46 yrs old when it happened, in August 2020. On admission to a&e, it was 4 days later that doctors eventually discovered cvst, but by this stage my condition had deteriorated to point where I was having seizures, was unconscious and my husband was told I may not make it. I was then transferred to another hospital for emergency thrombectomy to remove clot which apparently was extensive. My husband was told there was so much bleeding that the odds were stacked against me but I came through. The neurologist consultant said it was a miracle as they nearly lost me. I was told that the only risk factor they could identify as cause of cvst was being on contraceptive pill. I spent over 3 weeks in hospital and currently still off work recovering. I was on Warfarin for 6 months & currently on Keppra anti seizure meds and folic acid. Recovery has been remarkable when I think back to where I was back in August & where I am now. I went from being unable to walk and cognitively had problems with memory and attention. Since then I have improved so much & I hope to return to work in 6 weeks. Have to say though I'm apprehensive about return to work as it is a very demanding job mentally & intellectually. I'll just have to try not to get anxious thinking about it and take each day as it comes.

[Karenc27]

Oh forgot to mention that in December 2020 I was reviewed and CT scan showed veins that had been affected had recanalised. Part of clot still remains in Sigmoid Sinus & jugular vein.