I had micro vascular decompression surgery at the end of September, immediately on coming round I knew something had gone wrong, I had all the symptoms of CVST but ct was clear so I was sent home 6 days post op still in immense pain, double vision, weakness and balance issues.
Needless to say I ended up back in A&E when I was in and out of consciousness, that was a whole other hellish experience, after 36 plus hours on a trolley in a corridor I began having seizures and they finally took notice, they suspected blood clot from the off but I got left to it as they were so over run, I turned a corner once the blood thinners started to take affect.
I’m now ten weeks post op and post CVST, my care has been appalling, I have seen haematologist and neuro ophthalmologist but that’s it, I’ve not seen anyone regarding my on going symptoms.
My eyesight has gone from 20/20 to severe diplopia, I have glasses that don’t work for around the first 4 hours of the day, it’s driving me slightly insane!
I just would like some advice on recovery as I haven’t been given any from the hospital.
I’m exhausted, weak and wobbly, my memory and concentration is shot to pieces and I just don’t know when or if I’ll ever feel normal again!
I’ve had to give up self employed work as I can’t see my computer well enough to work. So that’s another stressor.
Would be interested to hear about other peoples experiences with cerebral sinus venous thrombosis.
@Loopy44 I cannot offer any input as I have not suffered any symptoms like you have. My heart goes out to you though as its dreadful care you have had. I don’t care how busy they are, when you decide to become a nurse or doctor you take an oath and these days, I think they have all forgotten. Your are in my thoughts for the future
I recommend looking into Earthing to improve your circulation, red blood cell zeta-potential, and overall electrical stability. It helped me. Please feel free to ignore,
@Loopy44 hi & welcome to the community. Sorry to read of your experience. It doesn’t sound great.
Sadly a lot of people are discharged after a stroke with very little information. I suspect this is partly because every stroke is different and we all have different effects even if we had the same type of stroke. However, in my opinion, a little bit of explanation of the sorts of things we can expect would go a long way to help relieving some of the anxieties that we all experience.
Whilstick probably doesn’t feel like it you are still in very early days after your stroke. The good news is that over time your symptoms should start to improve. This can take a long time and a lot of patience is required. No one can say when you’re likely to start feeling more normal again as the recovery time varies for everyone but little by little you will hopefully notice some positive improvements.
Work may not be possible right now but that doesn’t mean it won’t be again. It is something that you will just need to judge as you go along. I return to work 18 months after my stroke others return to work much sooner and some people take longer.
If you are unsure about what is happening next or what follow-ups have been requested you may find them detailed on your discharge letter. If not and there are things you feel you need then please speak to your GP who will be able to sort some things for you. You could also give the stroke Association helpline a call 0303 3033 100 and they will be able to advice you on the types of things that you need to be considering.
I have a range of cognitive visual-spacial issues due to cerebellar stroke, this also includes nystagmus, blurred and double-vision. You could start an exercise regime of using Brock Strings to help correct your double vision. I used them for about a year but was not very persistent with them. They are inexpensive, costing about five quid. If the glasses you are referring to are prism glasses, I have never tried them.
Welcome to the community, I’m sorry to hear what you’ve been through, it sounds like it’s been a really rough time for you.
As some of our other members have said, it’s difficult to know what someone’s post stroke journey will be like as they’re all different. However, as @Mrs5K has mentioned you could give our helpline a call. They will be able to give you a bit of guide on what should be happening and what care you should be getting at this point.
I hope you’ll find this community helpful for your recovery. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Hello! I had CVST almost two years ago which caused a subarachnoid haemorrhage. I’ve made a good recovery. I’ve posted my story on here but I’m happy to answer any questions where I can.
