any one else had venal thrombosis of the saggital sinus ?


Hope I got the correct spelling of this - can't recall and not getting out of bed to get the original paperwork ! Has anyone else been through this ?

I was diagnosed with this at the end of October after a couple of seizures and CT scans.

Have improved a fair bit since then ( now safe to be on my own although still in mourning for my "old life" - no driving, working - hence no money - going out , swimming on my own, yoga at the mo, etc etc ) .

Head pain reasonably under control although I am concerned about getting addicted to Tramadol so trying to only use that at night time but my shoulders /back are extremely sore and painful - keeping me awake and annoying.

Memory issues generally improving - although I have occasional blips - and watered some plants with gravy yesterday !??

Trying to remain positive and cheerful - but this is so difficult as I live on my own and the guy I had been seeing for a long time decided this was his chance to leave - kissed me goodbye at A&E and never to be seen / heard of since.He won't reply to my text messages or phone calls. I feel so upset about this that I know it's holding me back recovery wise but don't know how to move forward. Grrr !

Any comments /support welcome .

Have a good day all :-)

2 Replies

  • Hi. Didn't want to put Hi moo as didn't sound too polite!!??

    I don't have this condition and don't really know anything about it but the venus (venal) bit will mean it is related to your blood veins and thrombosis usually means there is a clot in the vein. As for saggital sinus am not at all sure but we have sinus's in behind our noses and normally they drain but can become blocked. I think a sinus is a channel which can develop in other places in the body too eg an abcesss deep in body flesh can often develop a sinus where the infection keeps leaking out of the skin. But don't start worrying that these things relate to you but what I would advise is to ask your GP or Hospital consultant to explain.

    It is great to hear that somethings have improved for you. It also good that you are going swimming and to yoga. I can empathize with you about having had to surrender your driving licence because this happened to me too. It really does limit where you can get too doesn't it and I had to learn about the bus and trains or limited myself to where I could walk too. The worse time was winter because despite donning the waterproof coat and huddling under a brolly I still seem to get soaked and freezing cold especially when waiting at bus stops with no shelter and on such a narrow pavement that the cars whizzing by would soak me with the spray they caused! Fortunately I had no further fits since discharge from the hospital and after a year i got my licence back although it is a 3 year medical review licence and I am at the moment reapplying as it expires in the new year.

    Am extremely sorry to hear that your 'guy' left you. Sadly I don't think that is uncommon with BI that relationships break down because of the partners fear or lack of understanding because the BI does change us. Maybe him butting out at the A&E point was better than him going some of the journey with you and then deciding he had had enough. He clearly wasn't a good guy for you that he backed off at the first big hurdle. Yes I can truly understand how hard it must be for you coping on your own and to suddenly be socially isolated as I came out of hospital having to manage on my own but also having to parent a young child. I have no contact with any family and many friends fell by the wayside too. Is there a Headway service near you as that might be a good place to go and get support and to meet others who truly do understand the impact of BI?

    Best wishes x

  • Hi Strawberry Cream .

    Thanks for your reply ...... nice to hear from people in similar boats and that I am not alone....

    I've had a reasonably positive day so far - and been swimming with my youngest while he is at home from Uni ( not allowed to swim alone and yoga doesn't restart until Mid January for me).

    I have a review with the consultant on Tuesday - not expecting anything other than just that - a review - and a chance to ask questions and hopefully find out when I might get rescanned to see how I am doing ( though I think they had originally said not until March/April time - I might ask if I could have one sooner) .

    Can't stay on computers too long still so keeping it fairly brief for now.

    K x

    Moo was one of my late cats - so it's fine to use as a name :-)

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