Cerebral venous sinus thrombosis

[Rabiul]

Is there any patients who faced CVST,can they share their memory? I m also having same problem last 4 months,but now my INR increase to 4.1 and my GP hold dose for one week....

[moo196]

Yes!! Me! In Oct 14. I'll write more when I get home.

How are you doing?

[Gordonek]

Yes.. I have CVST. I was admitted to hospital ET with stroke symptoms. I was very lucky to be diagnosed with CVST.. standard CT scan doesn't show it. Thrombosis was extensive and started Warfarin and a LP to reduce cranial pressure. This was 15 months ago. The Thrombosis is largely unchanged although I have no symptoms other than brain fog. I switched to long term apixaban 2 months back. No further neurology consultation as they do not expect any significant change. The cause of the CVST is a blood cancer called Essential Thrombocythemia which causes overproduction of platelets and an increased risk of thrombosis. This is treated with long term chemotherapy tablets. I can explain in greater detail if you require

[moo196 in reply to Gordonek]

Mine had no cause found

[Gordonek in reply to moo196]

Did all your clots recsnalise?

[moo196 in reply to Gordonek]

Yes, blood flow went a different way round. There remains a remnant of the original blood clot, but nothing can be done about that.

[Gordonek in reply to moo196]

Yes... That sounds familiar... I have same volume of clot in superior sagittal, left and right transverse and left and right sigmoid... Only change from diagnosis is with the straight Sinus and Vein of Galen although the Neurologist said the improvement in the straight Sinus was important.... Guess you are on permanent anticoagulation?

[moo196 in reply to Gordonek]

No. I stopped after 2 years. The risks outweighed the benefits in my case. So I'm just taking daily aspirin, wearing my medical Id and going travelling as much as I can. Life's too short!! 😁

Glad I've finally met some people who have been through the same thing.

Have you checked out the headway section of the site?

[Gordonek in reply to moo196]

Sounds good.. Yea it's a bit of a catch 22... I always recall a comment from the ophthalmologist that helped save my eyesight when in discussion about anticoagulation when he said 'sometimes it's good to coagulate'.... My advise from Neurologist and Oncology haematologist is long term apixaban... So fair enough....Will have a look at headway thx. One other question.. What., if any, problems do you have with your current CVST situation or did you have previously that have improved

[Gordonek in reply to moo196]

Ps... I agree with the 'life's too short'... I was lucky enough to be able to stop work and spend half my rtime in Poland, building a house, and Scotland where I am from.

[Rabiul in reply to Gordonek]

My cause was head injury and i took protein powder,my GP told me that time the warfarin wil requr for next 6 month(1 Novembe, 2018--cont..) then i have to do a MRV to chck whether the thrombosis stay or not.. I m very deprsd abt it,😣i hope the thrombosis will be vanished with in 6 month, is it a life time disease?

[Gordonek in reply to Rabiul]

I wish you well in the clots disappearing in full. I also understand the anxiety of the possibility of the clots remaining as I have gone through these wishes / feelings. From what I can tell... The effects of having CVST is personal to you... so it's not necessarily the same as my or others experience good or bad.. Good luck with eveything

[Rabiul in reply to Gordonek]

Thanks ♥

[moo196 in reply to Rabiul]

Rabiul, November 18 is a short time in terms of brain illness. I know this may not be what you want to hear, but the first year is the worst. I worked hard on my recovery and needed a lot of assistance from from friends, family and professional people. Things take a lot of time. I'd suggest that you perhaps take a look at the headway section of this website.... A lot of people have been through similar experiences. Do share.

If it helps, I recovered enough to return to work and have been travelling a lot since.

Take heart... Take time and set yourself some small routine to help you recover.

[Rabiul in reply to moo196]

Thanks Moo196 ♥

[Rabiul]

I have some pain in the middle of my head 😔😔is it any dngr?

[Gordonek]

There is a Facebook group for CVST if you are interested.

facebook.com/groups/1083714...

[Gordonek in reply to Gordonek]

Yes Rabiul I am a member... surprising the similarities in day to day problems... and the role the contraceptive pill plays on the CVST risk.. I am 'fortunate' in that the primary cause of the CVST is known... With a lot of people on the group it is unknown... Thx

[GillyA]

I know this is an older post, but I’ve just been diagnosed with CVST. I’ve had no real symptoms apart from minor changes to my eyesight which were picked up by the optician. I had an initial diagnosis of IIH, but as sight problems persisted a lengthy round of tests found CVST in my right sigmoid sinus.

I have also tested positive for APS (to be confirmed later). All the doctors keep telling me how lucky I am. Intellectually I know this is true, but facing the prospect of long term warfarin and potentially having a major impact on my work, I’m not feeling that lucky at the moment.

I hope things have stabilised for you and life is back on track.