Newly diagnosed and scared!: I've recently... - Macular Society

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Newly diagnosed and scared!

KatrinaS profile image
9 Replies

I've recently been diagnosed with BRVO , I'm waiting for hospital appointment for EYELEA injections. I've been told I will need them for 3 months then laser treatment. Is this likely to improve my vision?

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KatrinaS profile image
KatrinaS
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9 Replies

Hi Katrina, firstly sending you a hug x diagnosis is always a shock and scary. It's normal to feel terrified and a bit depressed - it's the emotional equivalent of a bereavement so take things easy .

Having said that, the inj do work for most people. They should stabilise your condition and you may well get an improvement in your sight.

The inj aren't as bad as they sound, tell them you are nervous, want lots of anaesthetic and you will be fine. I always hold a nurses hand too which helps!

Wishing you all the best going forward.

I too have brvo and everyone's journey is a bit different. This forum is great if you need support and the macular society is excellent they have info on web and tel/email helplines plus a buddy system if needed.

KatrinaS profile image
KatrinaS in reply to

Thank you so much for your help. I've felt all sorts of emotions since being diagnosed. I'm usually an upbeat person but this has really knocked my confidence. I think it's the side effects of the injection I'm more worried about, though must admit I'm scared silly at the thought of the injection.

angelah25 profile image
angelah25 in reply to KatrinaS

Don't be. The thought of the injection is worse than the actual process. You will feel a little pressure on your eye. I thought I was going to hyperventilate at my first injection. The nurse had to remind me to breathe! I did end up with a red eye from my 1st injection. Did find it quite amusing seeing peoples reactions when looking at me! Lol! Best of luck and tell them you are nervous - the nurses are so supportive xx

JJnan profile image
JJnan in reply to KatrinaS

Hi KatrinaS, its the thought of inj in eye , but honestly it sounds worse than what it is, i went in very nervous and when it was done first thing i said was ...it wasnt that bad :) ...good luck xx

in reply to KatrinaS

Hi Katrina, I wouldn't worry too much about side effects - they have to list them but I believe the vast majority of people have no problems.

More of us have had a sore eye due to the antiseptic, if this happens to you just tell them to flush it more next time and if you really can't put up with it they can use something different. It doesn't usually last long anyway and not every time either. Easy to say but we've all been there and I'm 99.99% sure you will be fine xx

The alternative is much worse than the treatment. Once you have the 1st out of the way you'll feel better!

in reply to KatrinaS

Hi KatrinaS, you and me both I have my first injection on Tuesday and I'm terrified feel sick jittery depressed angry snappy you name it I feel it at the moment oh and don't want to do anything, thinking I'm just a horrible person and using this as an excuse?? I really don't know. I was diagnosed with COPD (lung probs) after I had a clot in the lung in June, now this I don't know wether it's this or for some reason my personality has changed I'm also severely disabled and can't get around without a wheelchair and a lot of help, I try but I must admit this other me!! seems to be winning don't know what to do. I am taalking to one of the Macular Society councillor I really feel better after we've spoken then come the evening I'm back to where I was will it ever get any better. Sorry sound so wrapped up in myself all you guys n here have the same problem I am trying but it really is difficult probably feel better after Tuesday. SOrry about the moan/rant bless you all hope you feel better soon... CHristina

Ayayay80 profile image
Ayayay80 in reply to

For Shannie04

No, Shannie04, you are not a horrible person! You have such a lot to contend with, I am not surprised you get angry and depressed. You are perfectly entitled to have a good moan. You will need time to be able to put things into perspective. And if you can have a good cry it may ease the tension in you; then perhaps in time you can see the good things in your life and around you again. Try not to hang on to your anger; bitterness is a destructive emotion and does not help, as I well know from personal experience.

For Shannie and KatrinaS

Do not worry too much about the injections on Tuesday, although we have all been there and worried ourselves sick. It is only natural to worry, but they are not as bad as you think. Before long you will take them in your stride.

Good luck to both of you and lots of hugs. xx

in reply to

Hi shannie, sending you a hug x

As ayayah says you have a lot to deal with and perfectly entitled to feel hacked off with it all !!

Don't be hard on yourself, you are getting through each day and once you have the 1st inj out of the way you will feel better because you will be doing something positive and moving forward with hope. I felt awful after my diagnosis, cried myself to sleep for 2 weeks terrified and angry, didn't want to speak to anyone. We understand here, you are not an awful person and you are not alone x

The Mac Soc are wonderful, maybe you can find a buddy through them to help you between counselling sessions? If you're in the UK you can also get your gp to refer you for counselling.

Best of luck going forward. My tip for inj day is to take two paracetamol an hour or so beforehand x

Macular_1 profile image
Macular_1

Hi Kartina,

I am so sorry to learn about your diagnosis.

Please see out booklet about treatments;

macularsociety.org/sites/de...

We also have a factsheet about 'Retinal Vein Occlusion which you can obtain by calling our helpline 0300 30 30 111 (9.00am to 5.00pm Monday to Friday) or by emailing a request to help@macularsociety.org

The treatment should as other posters say, stabilise your vision. In some cases some sight will be restored, but this is variable.

Please call our helpline (number above) if you would like to have a chat with someone.

Best wishes

Helpline

Macular Society

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