Hi. First post. I had a Cerebellar stroke 19 days ago. Main areas of impact are physical. Left side numb, weakened and struggling with fine actions. Unassisted standing and walking are impossible. Swallowing and talking are affected. I also have low blood pressure (one morning 67/38 on normal base of 120-30/80-90). Right now it hovers 100-115/70-80. So I am worried about lightheadedness/fainting if I stand up or exercise. In addition, I am struggling with the information my eyes are sending to my brain. There is double vision in part of the field, my shortsighted eyes have different prescriptions. So I really don’t know what is causing the lightheaded sensation that my brain is sensing. Consultant says 99.9% zero eye damage from strike but I can still feel numb left eyeball and wonder if he is right. Maybe no impact on optic nerves but what about nerve/s controlling muscles moving or changing shape of eyeball. And of course no professional has yet waited for me to articulate haltingly and softly my actual concern. I have requested an assessment 8 days ago and 6 times subsequently with not a single response. I would be really grateful for any thoughts or similar experiences
@AndrewLBrown Hi & welcome to the community. Sorry to hear of your stroke. It is very early days for you yet but things will improve over time. When you say you have requested an assessment is this with the stroke team? You may have a bit of a wait for an appointment but if you are concerned you could try contacting PALs at the hospital and see if they can help.
When you were discharged did they do any referrals for you? Sounds like you should be referred to ophthalmology for your vision issues- I have double vision and they have been helping me. I would hope you have also been referred to things like physio, speech & language etc.
If none of this has happened please speak to your GP and get them to sort it all out. You sometimes have to make a nuisance of yourself to get things done. Your GP can help with the BP issues too.
If they are too impatient to wait for you to speak (they shouldn’t be) then perhaps write down what you want to tell them or take someone else with you who can get them to listen.
Best wishes
Ann
Hi Ann. Thanks for the response. Iam still inpatient and there referral will be to Orthoptics. I am seeing physios and OTs and the expectation is that those will continue after discharge. No complaints on that score and they have responded to my concerns about blood pressure
Hello Andrew - Welcome to the community.
I am sorry you aren’t getting the support/information you would like and would echo what Ann @Mrs5K has said in terms of what you can do.
I must say I am surprised that your request for assessment is not being responded to. In our experience, a consultant visited every day and we got to speak with them about progress and concerns we had.
I am not sure where you are as an inpatient but it seems very strange no one is speaking with you about your concerns.
I note your stroke was 19 days ago which is quite recent and also there are a lot of things going on, but despite that I see no reason for lack of communication/feedback.
Perhaps you can ask to speak to the doctor or bring it up with the OT/PT as they are part of the team that is looking after you?
I wish you all the best.
Namaste|
I have prolonged visual-spatial issues after cerebellar stroke, my eyes are 100% perfect vision, but my brain can’t effectively communicate to them, so I suffer blurred vision, double-vision and nystagmus. I am five years post stroke and still have these issues. I did a lot of visual rehabilitation over the years but find that every new surrounding challenges the way my sight works. The nystagmus is particularly challenging as it brings on nausea and giddiness, it also means my visual reflexes are muted and I have to be careful crossing roads. I have had a few moments over the years where my brain and proprioceptive capabilities have synced, small luxuries that I treasure. Fatigue can make it worse. It’s like looking at the world through a not, particularly, well made Kaleidoscope. You can try Brock strings, visual mapping, gaze stabilisation, and other rehabilitation methods. It’s a common route for rehabilitation post-stroke which, tends to concentrate on physical rehabilitation as opposed to visual that many cerebellar stroke survivors need to DIY. You can investigate prism glasses, I have not tried them as I can’t afford them.
Welcome to the community, I’m sorry to hear about your stroke and the difficulties you’re facing. I hope you’ll find this community useful as you navigate through your recovery.
We have some information on our website about the effects of stroke which covers everything from physical to vision. Hopefully reading through some of this information may help.
if you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
I have a lot of experience with stroke / eyes, All the progress I made was entirely of my own making ; countless visits to the hospital and ophthalmologists came to nothing. It used to take me 45 minutes to open my stroke/side eye in the morning. Then I discovered photobiomodulation PBM.
I overcame to a large degree blepharitis, Meibomian Gland Dysfunction, double-vision, dystonia, intra-ocular high pressure, and more entirely on my own… it took 3 years. You could claim my body healed itself (with some encouragement). My first tool was Red Light therapy, then grounding to reduce eye-pressure from 28 to 20, and finally sunlight therapy, using late evening sun to open my glands. Remove your sunglasses ! My message is that nothing cures us better than nature. I will likely do a clip on my eye on my channel
Hope you find a solution , R