Central venus sinus thrombosis - cvst

My dad has suffered a very rare stroke (CVST) 16/03 with extensive clots in many of the vessels in his brain. As it is so rare, I haven’t come across any posts with lived experiences of CVST. I would be keen to hear from other people/family members who have been affected by CVST.

My dad is currently in hospital, awaiting a bed in a rehab facility. 4 weeks on from his stroke, but only 2 weeks having been awake (first 2 weeks on ICU in an induced coma).

He has lost all movement in his left side but can feel everything and has slight weakness in his right side (likely due to lack of exercise for a month rather than impact from the stroke).

His speech is good, slightly quieter than usual but not slurred and he remembers everything from before the stroke. He then has a period of 3 weeks or so that seems to be blurred/blocked in his memory from just before the CVST hit and waking up from the coma.

I look forward to hearing other peoples experiences :slight_smile:

@lucy_mccaslin so sorry to hear of your dads stroke, sounds like he’s had it rough. I don’t have any experience of CVST so not able to offer any advice but just wanted to say I hope his recovery goes well and he gets all the support he needs. xx

@Mrs5K @Loshy Thank you for your kind comments. He is lucky to be as well as he is considering how poorly he was, we are just frustrated at the moment that he needs physio urgently and the bed isn’t ready so we are worried that the delay will significantly hinder his recovery! Trying to stay positive each day x

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It is a worry isn’t it. Are they doing some rehab with him in the hospital? Hopefully they’re doing something which will all help. Staying positive is good. Male sure you look after yourself too as it will take a lot out of you too.
Hope he gets the bed he needs ASAP.
Best wishes xx

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Yes he is getting some minimal physio which I’m sure is helping and I am doing some gentle massage when I visit to keep him limber!
Thank you again x

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Hi - only just catching up with posts on the forum - hope your dad is recovering - I also had aCVST