Anyone here have a cvst / occlusion of a venus sinus?

LeeCVT

As per title, just wondering if anyone here has had a cvst? The title the Dr's gave my condition was an Occlusion of right posterior transverse venus sinus.

Honestly, I thought I was a goner. Main symptoms at time were confusion, slurring to the point nobody could understand me, pain worse than anything I'd ever experienced, very high temperature and swelling of brain.

I still experience confusion to some extent, my mental capacity is nowhere near where it was, memory is a big concern. I have lost memories of things you just don't forget such as my son being born and my short term memory is shocking.

I have vision issues that make life very hard, I'm extremely sensitive to light and my right eye is very blurry. Bright light usually makes my headaches a lot worse.

The worst of the symptoms is the pain, I don't understand why I'm in so much pain almost constantly. I have constant pain in my head, my neck and shoulders. I'm on the extended release morphine and oramorph and it does help but it still only get my pain levels down to 7 / 10. Doctors say they hope that the problems will eventually resolve themselves but they are unsure. What they can say is that my condition isn't life threatening and that is very good.

I was told that my condition is very rare I'm wondering if anyone else has this and went thru similar issues? Thank you

Rachel_Scope

Hi @LeeCVT. I'm sorry no one was able to reply to you. How are you doing? Did you manage to find anyone else with the same condition?