Cerebral Venous Sinus Thrombosis - anyone experienced this?!

[mammybear12]

Hi,

I've just been diagnosed with the above - came out of the blue with minimal symptoms... effectively a blood clot on my brain. I'm in middle of having tests to find causes but nothing is coming up as being a risk factor.

Last ones are a final blood test to check for a rare genetic blood disorder and then if clear they will be linking to covid vaccine. I know I'm really lucky it was picked up when it was, i know it could be a v different story!

Wonder if anyone has any experiences about this just being isolated one off and making a full recovery??

I've been put on blood thinners and hopefully not for the long term. Still in a bit of shock to be honest.

Hello, I realise this post was from a while ago but I’ve just been diagnosed with the same thing and was wondering how quickly you’d recovered and how you were doing?

Hi Lulumay,

Hope you are doing ok... how was yours discovered?

I had found out after 6 months of maximum dose blood thinners that they had misdiagnosed me and all my scans were normal- it was an error. I had pushed for another opinion as it just didn't seem right to me- it has been a challenge. It is a very scary diagnosis.

If you haven't already I recommend pushing for being under a consultant neurologist and a consultant haematologist and have any scans interpreted/reported by a neuro-radiologist.

Hello!
This is shocking to hear. I’m sorry you’ve had to go through this and I hope they’ve given you an explanation of why and how they got that so wrong.
Im doing ok thanks. It’s a very slow recovery so patience is needed. I had a CT scan with contrast dye which was how it was found. I did have symtoms although I was convinced there was something wrong with my ear not my head. I was kept in hospital on a neurology ward so have a neurology consultant now. They’ve said I’ll get referred to haematology if my blood is still not behaving in 3 months time. Thanks so much for replying and offering really useful advice. I really appreciate you taking the time. X