Opthalmology Appointment

Today I’ve been for my 6 week opthalmology follow up…well it was nearer 6 months but who’s counting :grin:
I have been left with a weak left eye following my stroke which means my eyes don’t work together as well as they should do (convergence I think she called it). I was given some exercises to do when I saw the ophthalmologist in April but it seems there has been no change. She has asked me to do my exercises a bit more intensively for 4 weeks when they want to see me again. She did mention that prisms might be an option but was reluctant to go that route as eyes get dependent on them which leads to other problems. I hadn’t realised though that if the convergence doesn’t improve there’s a possibility I could end up with worse double vision. So I’m now redoubling my efforts to try & get my eye working properly. If anyone has any ideas on other things I can try I’ll receive them gratefully.

2 Likes

@Mrs5K sorry to hear this Ann, but with your determination I’m sure your eye will improve.
Doctors are not always correct as we SS know.

I wish you lots of positivity and luck kindest regards Loraine x

@Loshy Thank you Loraine. I’m hoping my renewed determination will make all the difference along with hoping the dr is wrong :grin:

Compared to what youre going through this is quite minor.

Best regards

Ann xx

2 Likes

@Mrs5K thanks Ann. I believe the doctor is wrong. All of us SS have improved more than doctors expect. Not to mention the fall out of other problems we experience.

I just had covid and flu jab this morning and I keep waiting for something to happen, fingers crossed. I won’t say it!!

Lots of luck to you x

2 Likes

Hi, I completely sympathise with your situation, I’m 5 years post stroke and I lost the peripheral vision in my left eye following my stroke and it makes me so angry that we have to fight for every bit of help following a stroke. No one mentioned to me that my sight could be affected or recommended having a specialist assessment and it was only after paying privately for a general assessment at a Neuro Rehab Centre that I realised that my vision had been affected and that this was common after a stroke. I then began the battle of trying to be assessed by a specialist under the NHS. After months of backwards and forwards with emails I was finally given an appt to see Professor Leff in the Eye Clinic at the National Hospital at Queens Square in London. He confirmed that the damage had been done and could not be repaired but that I would get used to the situation and would compensate for the loss.

In the meantime I went on line and used the 2 free online therapy programmes detailed below, which were both developed by University College London and are funded by the Stroke Association for patients with vision problems following a stroke :

“Eye Search” and “Read Right”

I gave them both a try, although I didn’t really notice a change in my vision.

Good luck.

Regards Sue

@Susan_Jane It really does seem that a lot of us have to fight for the treatment we need. There should be a set treatment pathway for some of the basic checks to be done. Part of my stroke affected my occipital lobe & vision issues were one of my 1st symptoms so i was referred to opthalmology straight away. It was 5 months before i got my initial appointment with them. Most of my visual issues had resolved at this point but the convergence issue was something i didnt reslise i had. They said at the time that most of the recovery would be in first 6 months. I was a bit miffed as i lost most of that 6 months where I’d have been doing the exercises had i known.
I will have a look at the programmes you mention. Thank you.
Best wishes.

Ann x

1 Like

Hopefully the renewed doubling up with the eye exercises will yield results for you Ann.

It must be so annoying that you didn’t get the advice when you needed it in the beginning.

Best wishes

1 Like

Hello Ann @Mrs5K. I have an issue with double vision. My 3rd and 6th cranial nerves are affected. My lateral movement improved so I could at least read again, but cannot look up at all and limited down. I have never been given any exercises and see the orthoptic people every 3 months to monitor progress. Prisms have been mentioned but it is still too much to be fixed by this. Importantly you are not permitted to drive if you have any double vision at all, hence I patch my affected eye with an opaque patch to do that, but it takes time to get used to the loss of depth perception. I have to patch my glasses just to move around as I walk into things if I don’t. Recovery is such a slow process. I only recently learned that it cannot be fixed, I feel like I’ve been waiting for something that won’t happen. I have another appointment on the 1st November. Will message you if there is any thing of interest that comes up, Julia x

@JuliaH that must be really difficult for you. I have difficulty with reading in that I have to concentrate so much harder to be able to read. Something i used to love i now do rarely as its too much effort. If only they’d tell us everything up front i think we could deal with it better then. Hope your appointment goes well on 1st November. Best wishes Ann xxx

1 Like

Morning Ann and Sue. My experience is very similar to yours.frustrated at the lack of information given at time about vision loss. I wondered if it was deliberate ? We had just experienced a stonking event and recovering and maybe to be told more bad news at this time would hamper our recovery.Remember being wheeled to have eyes scanned and tested and was told some peripheral loss of vision on left from both eyes.Once home wondered what could be done. Had private Ophthalmology Appointment and was told there was nothing he could do and in his experience my vision was not likely to improve “ but you never know.” So booked to see my Doctor for confirmation. The good news he says is “ Your vision in not likely to get worse, the bad is,it’s probably not likely to get better. Eyes ok, part of brain that controls peripheral scanning damaged.This Was at stage when told you have to accept, adjust and adapt. So dug deep and swallowed that first bitter pill.
Stay posotive , I’ve enough vision to get bye and still in live in hope of some improvements I’m a lazy begger and should research if any regime Or programs might help my situation.
Would being told at the onset have been wise ? Probably not.That’s the conclusion I’ve come too. Safe journey to us all what ever our problems
Paul

1 Like

@Pds Hi Paul, you may be right there. Too much bad news at that early stage might have been a bit of overload. My initial vision issues were seeing lots of flashing lines in front of my eyes. Was really weird & i’m very grateful those lines went away after a while. The convergence issue i was initially told wouldn’t improve but no mention it would get worse. As you say accept, adjust & adapt is the way to go.
I’ll keep my fingers crossed that one day you may get some improvement. Best wishes. Ann

1 Like

Ann, I feel the stroke you had is identical to mine, I also have double vision in my left eye, and again I am now on my third canceled ophthalmic appointment since November last year. I do have prismed glasses and they work very well. I also purchased an eye massager which does seem to help. I will let you know how I get on with the ophthalmologist as for your injections I am having my injections 2 weeks apart so hopefully can tell which causes the problems. Did you manage to get any shoes?

johnx

Hi John, @bigjay57 it does seem that we have some similarities in our strokes. Im interested in the eye massager. I’ll have to have a look & see if it would be suitable for me.
I haven’t bought any shoes yet but i found a couple of pairs on the site you mentioned that i’m pondering between.
Look forward to hearing how you get on with your opthalmology appointment.
Regards

Ann x

Good morning Ann, I hope you are fine and dandy, the eye massager I got with amazon vouchers I earned from filling in online surveys, it is made by Renpho.I hope that is useful.
kindest regards

John x

1 Like

Thank you for the info John. I will have a look at that brand. I fill in surveys for amazon vouchers sometimes too.

Best wishes

Ann x

1 Like