Has anyone suddenly lost their vision

[lostsoul2121]

In February I lost my central vision, I was diagnosed with Myopic Choroidal Neovascularization, which essentially is a leaking blood vessel blocking my central vision. This then led to scaring and subretinal fibrosis. Under gone 3 eye injections and they are the worst thing I've ever experienced - I feel very traumatised.

Everything seemed under control, then recently went for a check up and had the horrible news that I had to have another injection in my eye. I'm feeling pretty shit as I have to take time off work and this is straining work relationships with management.

My mental health is severe, I'm unable to recognise faces or read with that eye - I still have one good eye but doctors have said I'm high risk for this to happen and basically is only a matter of time. My question is, has anyone else suffered with this or anything similar, how are you coping because even 8 months on I'm struggling mentally and physically to adjust.

Hello.
I am sorry that this has happened to you.
it happened to me in April.
how are you feeling about it now?
did you recover some sight?

I am thankful I live a bus ride from Moorfields and that I went directly to their a&e rather than waiting to see optician.
and that I was given first injection within 24hours of loosing the sight.
I’ve since had a second injection.
the black area is now a deep shadow.
I saw the optometrist today, because I feel like my vision isn’t great, and had hoped that adjusting my prescription would help. But despite their patience and doing a thorough sight test we concluded that the glasses I wear now are giving me as good vision as I can hope for.
that the blur is all down to the CNV.
so I need to accept that a) I’ve responded really well to the treatment- the black spot is now a deep grey cloud b) this is it and I have to work with it. And that I have 2 eyes and the other eye can see.

I called RNIB the week it happned because I had totally freaked myself out and wanted some balanced understanding of what had happened and what could happen.
i had been so distressed when I saw the Dr that I did wonder if they had limited what they were telling me to limit my distress,
and the RNIB helped, by getting a retired ophthalmologist to talk it through.
I also had a consult with their Access to work advisor. And they were ready to show me all the ways tech can help, and what my employers responsiblities will be.
all of this helped to a) calm me and b) empower me to feel like there will be solutions that can help and support to put them in place-
has your work place been supportive?
have you talked to the RNIB
if not I would say I was a good call.
I’ve said to myself that I want to see what things are like in September- 6 months and from there I will know what support I need to continue to do my job.

I am thankful that I am close to moorfields- do you feel confident in the care you are getting?

they have told me I need to travel with a letter outlining my condition and that ideally I should identify a good ophthalmologist where I will be if I am away for more than 2 days, so that I know exactly where to go for immediate treatment. A detached retina is the next thing to worry about.
this was quite sobering.

i am an artist. I work on building sites.
i cycle through central London with 2 kids.
loosing more vision than this more than i can contemplate.

so I can appreciate how hard you are finding things

I haven’t contacted the macular society, but they have support groups.

I messaged you, because I feel alone in this diagnosis- it seems like I am / we’re? Too young to be having an age related macular condition. But here we are.

I hope that several months on from this post you are finding your feet, and that the fourth inject helped.

Also to add, the RNIB have a counselling service. Talk therapy really helped when I had severe PND and I think you sound like having the chance to talk would help.

@MumonabikeE5 , to be sure the OP sees this, you need to tag her @lostsoul2121

• you obviously have valuable information for her. I hope you both have good news.

@MumonabikeE5

Hello!

I'm truly sorry you have experienced the same thing as me.

I've now had 5 injections in total. They helped but didn't recover my sight because of the scaring. In January 2024 they gave me good news that it was stable. Fast forward to May and I'm having a flare up again. I've had to have blood tests because the uveitis (inflammation) is flaring up and they don't know why. They've put me on steroids and I have a a grey cloud blocking my central vision again.

I was doing better. However, this recent turn of events have knocked me again. I need to accept that this is my life and I will constantly be always worrying about my eye sight.

Thank you for giving me some insight into what you have gone through. It's really shit isn't it.

I've had talking therapy it worked somewhat but still on medication. Work have been supportive but at one out wanted to pay me off to leave. Im now back full time.

I'm back at moorefields next week for tests and the blood results - it's just very overwhelming.

Hello lostsoul2121

Apologies for my earlier stream of consciousness. You are the first person I’ve “met” like me.

Thank you for sharing your experience.

I hope that you experience another phase of stability in your eyesight and that this is a long one .

yesterday was the first time I realised that this would keep happening.
I think I had blocked out this possibility.

do you live in London?

im thankful that I live near this hospital. And my treatment to date has given me a deep feeling that i am receiving good and swift care. Which means that i have a much calmer feeling than I might if i felt like I needed to strongly advocate for myself.

It’s pretty outrageous that your work wanted to pay you to leave.
unless you are driving buses of kids around or a surgeon I’m sure that there can be work arounds.

I havent had practical experience of using access to work yet, but the RNIB we pretty solid in their statement that the government wants you to stay in work, and that there are funds available to facilitate that. Maybe if you haven’t already, chat to them, so you are on the front foot if work becomes difficult.

rooting for you!

@MumonabikeE5 , I just looked at this thread again. If you want the other poster to see your reply, you need to type @lostsoul2121

Hi OP

You've had some really good advice/info here

Morefiled is good but like any hospital or organisation, a bit of luck is also involved, IE who you get, the doctor/specialist

Sound harsh, but never fear to ask politely what the docs experience is with your eye condition and seek a second opinion. It's easier said than done, but a family member had a very hard-to-diagnose eyes condition, sudden onset over couple of weeks I think. Spoke with Morefields and private docs - (yes the private docs are at times same in private) - but IMO, seek advice from more than one and one doc that has years of experience in your type of eye condition if that makes sense,

I think RNIB has forums, people with similar eye condition - it may help reading them and see what they say

If you have a good employer of a larger employer, they too will help - seek advice from manger, then HR, the I'm sure they will seek occuaptaionl health and adjust your working environment to the best of their abilty

Wish you good luck !!