Webinar - CVST Cerebral Venous Sinus Thrombosis with Dr Michelle Lavin

[@gillettebennett7934]

The best information I've come across thus far, about this condition.

[@Nails.Hair.Skin.]

Can cvst be misdiagnosed as hypoplastic variant?

[@JM-on9xy]

What treatment is there for someone with CVST in which the clot in e sinus has now become permanent like a scar?

[@JonathanCheeseman]

I have recently been told there's nothing that can be done for me because a year of anti-coagulant medication has not shifted my 2 chronic clots and they are both too deep for surgery - or at least that neurosurgey would not accept the risk of such surgery. My concern is that the clots break up and become embolisms - a concern I shall discuss at my next haemotology consultation. Hopefully my concerns are needless.

[@JM-on9xy]

@@JonathanCheeseman I have been told the same that surgery is too risky and I must remain on blood thinners to reduce risk of more clots forming. My neurologist told me however that overtime the brain creates new veins to drain blood away from the brain so I hope this happens. What are your symptoms? Mine are pressure and pain my head, neck and chest.

[@JonathanCheeseman]

@@JM-on9xy Yes, my 2 affected sinuses both have "significacnt collaterals", which is med-speak for newly created blood vessels. The doctors seem entirely unconcerned by my remaining 2 clots so I'll take my lead from them and I too am unconcerned. The pressures and pains in my head and dizzy spells have subsided to almost zero. The only problems left are pulsatile tinnitus in my right ear and, as predicted by my neurologist, ocaisional severe headache - I mean bloody murderous headache! But really all is fine with me. Life goes on largely as before. How long is it since you had your clot?

[@JonathanCheeseman]

@@JM-on9xy Sorry for not answering earlier! Yes, I have many new blood vessels now - "significant collaterals" in medical speak. My haematologist told me there's no chance of my 2 chronic clots becoming embolisms as they are essentially stuck to the veinous sinus walls. That's a relief! The only symptoms I have now are occaisional stabbing pains in my head, sometimes some dizziness and pulsatile tinnitus in my right ear due to a change in blood flow - that's those collaterals for ya! How are you now?

[@joejames4095]

I'm one of the 2 in a million - Prof J Barber saved my skin !!

[@JonathanCheeseman]

In March 2023 when suffering the most appallingly severe headaches I was hospitalised and diagnosed with cvst - I am male and was aged 57 at the time. There were 4 clots, each in a different sinus. Subsequent testing shows these throboses were unprovoked - that is they can't find a cause for them and it seems that they 'just happened'. It's hard for a layman to understand why 4 clots ocurred at the same time, in 4 locations and I'm left wondering if has anything to do with the 2 Astra Zeneca covid vaccinations I had previously received.

[@JM-on9xy]

I am in the same situation with 1 clot identified in the sinus. I tried blood thinners but they didn’t work, so now the clot has actually become like scar tissue and is permanent.

[@JonathanCheeseman]

@@JM-on9xy My latest MRI scan shows 2 of my clot locations (superior sagittal & straight sinuses) have recanalised and are clear of dmage but the other 2 (right transverse & right sigmoid sinuses) have chronic throboses - that is the clots remain, more than 1 year after onset - and significat collaterals, that is new blood vessels. I am on 5mg Apixaban daily, which I am told is to prevent recurrence. So far it's working :) There are a couple of ongoing effects of the cvst: My neurologist told me he would not be surprised if over the next few years I would experience further extreme headaches - and unfortunately this has happened, and secondly I now have pulsatile tinnitus in my right ear due to "haemodynamic changes through alterations of veinous blood flow". I am now also under Ear, Nose & Throat's tinnitus clinic for this problem. I've also experienced quite a number of weird sensations & sharp pains in my head, along with dizzy spells but thankfully these seem to have passed now. I wish you the best of health and I hope you don't have any lasting effects.

[@earningkiduniya-k2z]

How are u now? ??

[@JonathanCheeseman]

@@earningkiduniya-k2z I'm mostly good, thank you for asking. I do rarely have some stabbing pains in my head and I have permanent pulsatile tinniutus in my right ear due to a change in blood flow but other than those minor things I am unaffected. I take Apixaban for blood thinning, probably for life. No complaints though. Are you affected by cvst?

[@earningkiduniya-k2z]

@@JonathanCheeseman My brother is affacted with CVST, In 2022 ,after 6 month treatment Dr stop all medicin. But now he again complaining headach and blur vision since 3 months , Dr start again medication and now Dr recomend blood thinner for life time.😑. Could blood thinner Are best for next any clot?