Just diagnosed with CRVO

[Beltinge]

Hi everyone. Only diagnosed last Thursday after visiting A&E for a shape in my vision. Was shocked at the diagnosis. They found I have extremely high BP. That has come down with the meds they started me on. I will get an appointment for the Macular clinic. The shape in my vision is changing. Getting larger and sometimes a dark colour. Then it can become hardly visible and a very pale colour. Does anyone else get this? Is it typical of the condition? Any hints and tips you can all give me. Thanks so much

[Becky_MacularSociety Partner]

Good Morning Beltinge,

It is a good idea to contact your eye clinic about what you are experiencing, just to be safe. If they feel this requires a sooner appointment to see you, they will give that to you.

All the best,

Becky

Macular Society

Advice and Information

[e-mail]

0300 3030 111

[springcross]

Hi Beltinge. Yes, I agree with Becky, you must speak to them about it just to be sure. x

[Corgimum]

Hi! I was also diagnosed with this last week. Like you, I’m in total shock and very emotional right now. So far, they’ve not found an underlying condition (although my diabetes test needs to be redone). I’ve been left with very blurry vision in my right eye. I can see light and make out shape, but not much more. The sight in the CRVO eye seems to change dependent on time of day, especially so in the first few days.

My injections start next week, and I’m hopeful for improvement/ stabilisation of the eye. Just trying to focus on the sight I do have in the left eye and focusing on looking after myself and preserving my remaining sight!

I’ve had lots of questions and anxiety regarding my diagnosis and my consultant has been very good at calling me back and trying to reassure me. The support of this group and information given by the Macular Society has been invaluable too. Don’t be afraid to ask questions and if you’re really concerned you can go to the eye A&E.

[Bluegreensea]

Hi Beltinge

I'm newly diagnosed myself - with MMD - and can't offer much in the way of experience. I do see a circle in my vision which alternates and is either dark or pale. I don't know what this is myself yet as I always forget to ask all my questions. (I've had two hospital appointments - it would be sensible for you to write yours down.) Try not to worry, but the advice you have so far is wise; ask for your appointment at the Macular Clinic to be brought forward.

Meanwhile, be kind to yourself: prepare yourself healthy meals; take exercise; be in nature; read!; sleep. I take a valerian capsule before I go to bed and find I'm less wakeful with anxiety during the night.

There is a lot of love here and everyone is incredibly supportive. It's been my saviour these past couple of weeks.

Life goes on; you go on!

Take care, and update us with your news.

BGS

[Beltinge]

Thanks for your comments - much appreciated. I went back to the Eye A&E dept. They were very helpful and so kind. Like you Corgimum I am in shock. They found at my first visit that I had extemely high BP and I had to go to the main A&E after the Eye clinic. There they kept me for the day doing loads of tests. Everything else is thankfully OK. They told me that I am lucky I did not have a full blown stroke. I exercise and eat healthily but I do have auto immune conditions. But such a shock. They started me on BP meds straight away and I bought a BP measuring kit and my BP is now normal. Back to my second visit to A&E - they did the scans again and lots of looking and there has been no change. But the patch I see in the eye had gone dark red and was growing and opaque. Fortunately today it is feinter and a pale grey and I can see through it. Don't know what that was all about. I don't have a clinic appointment yet but hope that arrives soon. Look after yourselves and thanks for the lovely welcome.

[Shimano]

Remember my shock and fear on diagnosis. Contact macular society counselling telephone line. They are very helpful with emotional support and practical advice. All the best.

[Hidden]

Sending you a hug X

Sight problems are known to be akin to bereavement emotionally so be kind to yourself.

Chase the eye clinic for the date of your appt. I would have expected them to see you within 2 weeks. The Macular society can advise you on this, they are very good.

Also worth printing an Amsler grid if you weren't given one. It's easy to use and helps you monitor any changes. Wear any specs as normal, look at the dot in centre, make note of any wavy lines etc ( I mark mine in pencil then you can see next time if it's different.) Use weekly.

Good luck going forwards.

We've got some " Useful Stuff" posts pinned that might help in these early days, Qs to ask clinic etc. It's a bit clunky to find but click the 9 circles on the header, select Macular society, scroll over to the right then down ( landscape is best), click " see all" on the pinned posts and they should appear. You have to open each individually but hopefully there'll be something there to help you x

[Beltinge]

Thank you Eyesright have looked at the useful stuff and yes very useful. Wouldn't have found that without your guidance.

[Hidden in reply to Beltinge]

You're very welcome x it was " twasbrillig" who had the idea for them and set them up Anyone can add new stuff to them, the idea being to keep them information repositories rather than like these more conversational threads. X