Swollen retina blood vessels

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I am worried, I went to Liverpool Hospital today St Paul's Unit, lots of scans and ultrasound on my eye.

I have a swollen retina and its been leaking fluid,

I am post PBT 14months and my vision is starting to be affected . Ive been having blurred vision, flashing and flickering shapes and shadows, plus my eye has been aching and bright lights really effect it.

I have just had two weeks off work ,but I dont think they are very supportive, my job is computer based and im really struggling with the computer. I already have it set on night mode and have a screen clipped on it but I am seeing double.

The tumour is the same size, which is good, so the consultant said at the moment they are not worried about that, but he wants me back in 6mths and to go to Bromsgrove hospital in 3mths.
He thinks I will loose my vision within a year, he said it could be tomorrow, it could be in 12mths.
My retina is still swollen and there is patches of blood. There's a chance my eye will grow new blood vessels but the consultant said they will be faulty, if that happens they would treat it with extreme laser treatment and I may loose the eye.
We spoke about the avastin injections but he said at the most it would give me about 3 months extra vision, and it can also give me cataracts and glaucoma, so i have decided against that.

Has anyone had these symptoms or had the faulty vessels grow.

I'm already wondering about work because my place say I can't do my job.

Thank you for taking the time.to read this x

latchbrook 1 month ago

Hi Livinglife

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

It sounds like a very worrying time for you so sending virtual (((hugs)))

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Simply Derek 19 days ago

Interesting.

You mention Avastin. It has as you say, possible side effects.

On the positive side, in my case the benefits were explained two fold. To cease the malformation of blood vessels (Anti VEGF) and in doing so, reduce the leakage possibility thus protecting from retinal separation and impact on the macular.

It is though, therapeutic, not a "cure".

I opted for it as some support to the recuperation was better than none.

All cases are different of course, but given the positive impact thus far (from a 1st cycle) reduced height at tumour site, removal of original fluid build up, I am on a 2nd cycle until the local eye department discharge me.

To date my sight has held up, but I do wonder of course when matters will change. It's a constant doubt.

It does come with the stress of having the eye further interfered with etc.

As PBT already raises the cataract/glaucoma possibilities, for me I had already accepted those could happen anyway, but can be treated/medicated if they do.

The display issue I have a thought. When you are on display, perhaps try an eyeshield/patch? It seems to my untrained head though it is, as the eyes work in stereo, taking the faulty one out of the data line may help?

It is a "delicate" choice given it draws a touch of attention, but at the same time, if you wanted to relate why, it allows education/awareness so getting back at the little beastie in some measure.

Best wishes with all your choices and your experience with this.

Livinglife 19 days ago in reply to Simply Derek

Thank you so much for taking the time to read this post and give a reply.

I have another appointment on August 5th so will see if the scans show any change.

My work place suggested getting a tint on my glasses and I have magnified everything on my computer.

I have thought about a eye patch, to let it rest but Im worried it will make more people ask me about it.

Thank you

Jeannette

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