Cerebral Sinus Thrombosis
Posted , 71 users are following.
I'm 32 and recently suffered from the above. It was only detected after suffering 2 weeks of intense headaches which eventually affected my optic nerves in my eyes. I wear glasses and after 2 weeks of intense headaches my eyesight actually became much better which baffled me. I was sent away from GP with the diagnosis of a tension headache (which I don't hold any blame for) but luckily I pursued further and booked an immediate appt with an Optician who found that my visual field was affected in my left eye. I was advised to go to the Emergency Eye Casualty who continued with further tests on my eyes. They discovered the damage to my optic nerves but at this point were unable to find the source and I was seen immediately by a Neurologist who at first thought it was benign cranial hypertension. He arranged a CT scan and said that he did not expect to find anything but was very surprised to see the clot on the CT. I was admitted immediately and underwent a lumber puncture. I spent 5 days in hospital and was discharged on Warfarin medication for 3 months. I have since undergone a repeat CT scan. I believe I was very lucky as any longer I could have had a stroke. I was advised to stop the oral contraceptive pill immediately as they said this may have been the cause but also that I have recently underwent a breast reduction 3 months before.
4 likes, 460 replies
Haf Guest
Posted
Hi all, I'm still here, but haven't logged on here for a very long time, which I feel really bad about, as I was desperate to speak to people who had had a CVST when it happened to me, as I felt so very alone, mine happened 4 years ago.
I promise to log in more often from now on.
3or4magpies Haf
Posted
Thanks Haf, it's been a nightmare, it's good to have people to ask/discuss issues with. I've replied to John, it's easier than to everyone, but please read that and comment if you have any input
3or4magpies Guest
Posted
Hi all, I can see i've got replies, however when I click on any of them the forum tells me it can't connect. Bear with me, I'll keep trying but I currently can't read your replies (thanks for replying though!!) x
3or4magpies Guest
Posted
Hi all, I can see i've got replies, however when I click on any of them the forum tells me it can't connect. Bear with me, I'll keep trying but I currently can't read your replies (thanks for replying though!!) x
3or4magpies Guest
Posted
Hi everyone, I've discovered the problem with being able to see the discussion is that I was logging in via internet explorer and I've just tried with chrome and I'm in!!! Yay!
3or4magpies Guest
Posted
Hi everyone, hope you're all doing well? We had the letter from the neurologist to the GP which we are copied into yesterday. Definite multiple PE's in his chest. Anyone know what'll happen from here when we see the Haematologist on Tuesday next week? I'm thinking warfarin for life? He keeps dropping out of therapeutic range for his INR too, so we've been back to fragmin as well this last 5 days or so. Deep sigh.
Tiger12 3or4magpies
Posted
I'm sorry to hear about the multiple PE's in his chest. My guess is that when he sees the Haematologist next Tuesday they will do a blood test to see if he has a genetic predisposition to blood clots (although with multiples in his chest, they may forego this). I was told if the blood test came back positive, it would mean Warfarin for life. Keeping the INR in the therapeutic range is a tough one. I wish I could give you some pointers on it, but it's been so long since I have had to do it. If you really need some help let me know and I can reach out to a friend of mine who used to test for the INR and see if she can give me some pointers.
helenvf 3or4magpies
Posted
Sorry to hear about the multiple PES. I also had multiple PES when I was 21 - 20 years apart - but the result is I'm on warfarin for life now. My haematologist did tests but some were inconclusive as the taking the warfarin masks the results. My INR fluctuates all the time it means I'm regularly at the clinic. You might find he may be offered an alternative drug ie apixaban which is more stable. He may need heparin too for a few weeks.
Hope he is coping in himself- and you too!!
johnhopps 3or4magpies
Posted
No matter how much they raised the dose of warfarin, my inr was below the recommended level (I believe 2). I was changed to the brand name coumadin which worked. A co worker of mine had 2 PE. He is on Xarelto. Doesn't have to get regular inr checks or watch his vit amin k (green) intake.
3or4magpies Guest
Posted
Thanks Tiger, John and Helen. I'm a nurse, so I do understand how Vit K in green leafy veg etc effects the INR, but we've avoided all Vit K veg and he's still up and down like a yo-yo INR wise. I'm taking his blood tests myself and dropping them up which does help in terms of time spent in clinic. I'm hoping that he can change to one of the other anti-coag meds like apixaban or rivoxaban in the long term if he does have to take it forever. We're off to France in the Summer and I'm going to need to change the travel insurance to reflect that he's now on warfarin (any pointers for good travel insurance for this very very welcome please). I'm wondering if he could be tested genetically for these clotting disorders rather than via serology (bloods) as, like you say the warfarin will make the results inconclusive. Also if he was genetically tested and found to be negative for any underlying clotting disorder our kids wouldn't need screening (My Dad had factor V leiden so I'm likely a carrier of that, although I haven't got it (been tested twice). If he did have it though they'd need testing (the kids are 8,6,4 and 20 months) in the future. Also he was a heavy drinker before this happened on the 19th March (he's not touched a drop since then), and it did give him sleep apnoea as a result (undiagnosed except by me). Since this happened I've done lots of research and sleep apnoea can cause PE's!! I'm wondering if it's all contributed to this happening to him (since he's stopped drinking the sleep apnoea and snoring have completely stopped).
Tiger12 3or4magpies
Posted
I was tested for the genetic predisposition for clotting while I was still on Warfarin. This was done via blood test. The tests came back negative therefore I didn't need to stay on Warfarin and my two kids didn't need to be tested. I don't know about the PE's and sleep apnoea.
3or4magpies Tiger12
Posted
Thanks for the information Tiger, are you in the UK? Gives me hope for some genetic testing of our own if you are. I'd really prefer not to have to wait another year or so to know what's caused this, if they can test him via blood for genetics on Tuesday that'd be fab.
Tiger12 3or4magpies
Posted
Unfortunately I'm in the U.S..They did the blood test on me within the first couple of months of the CVST. Hopefully they won't wait that long for your husband.
helenvf 3or4magpies
Posted
My warfarin levels go up and down too - maybe it's partly due to the dissolving of the clots????
I'm travelling to Spain soon and went onto comparison sites for travel insurance- you have to declare the CVST, PES and treatment- lots of choices available- i guess the cost is slightly higher.
Hope you get the answers you want next week.
I live in UK - keep been told this is a very rare condition. Categorised by insurance as stroke.
3or4magpies helenvf
Posted
Thanks for the info Helen, and yes something like 5 in a million get CVST, yet here we all are on this site hey? Hubby's consultant said she knows of a patient who got a second 7 yrs after the first. I didn't think to ask if they had any underlying disorders though that would make it more likely, and if they were on or off warfarin. Is there a reason you've not moved over to an alternative medication such as apixaban? I'm not sure if the new ones are as good as warfarin. Yes I'll be declaring all to the insurance companies, goodness knows what it'll cost us. I'd already bought our travel insurance for the whole family too, and declared my antiphospholipid syndrome (I have no treatment for it, it only effected me during pregnancies)