Stressful

[tulips]

I was diagnosed with dry eye macular degeneration 6years ago. My eye sight deteriorated at the beginning of the year so I went to hospital and was told I might have developed wet eye in my right eye. I had the dye test and am awaiting the results of that. I don't think they realise how stressful it is waiting to find out . I don't find out till June . I try not to think about it but you cannot help it

[andy1955 Macular Society]

Hi Tulips,

You should not have to wait for the results of your dye test (Fluorescence Angiogram) until June! If you are suspected of having develop wet macular degeneration, you should have hospital tests and if wet is found, treatment should commence ideally within a week. The Macular Society has a booklet called 'Guide to essential care for wet age-related macular degeneration'. It lays out timescales for diagnosis and treatment. If you would like a copy and a chat, please call our helpline 0300 30 30 111 (9.00am to 5.00pm Monday to Friday). We can email you a copy of the booklet please send your request to [e-mail]

Best wishes

Helpline

Macular Society

[Annie69 in reply to andy1955]

Hello Andy 1955

Is there a booklet with what treatment I should expect for dry age related macular degeneration? The only 'care' I have had from the consultant and GP, who advised me to ask the local optician. I got my original diagnosis from the copy of the letter the consultant sent to my GP with one sentence - "...luckily she does not have a bleed, it is only dry age related macular degeneration." This was nearly 3 years ago.

The GP tells me there will be no follow up hospital appointments because there is no treatment. How will I know if there is a change to wet? The high street optician's job is to sell glasses, not monitor my eye disease (although he is nice enough to do it).

A booklet with guidance on what I should expect from the NHS for dry macular degeneration would be very useful.

Thanks.

[gilpet in reply to Annie69]

Annie69, there is currently no treatment for dry macular degeneration but I would have thought that you should be having regular appointments at the hospital to keep a check on this, that certainly happened with me. Mine did turn to wet and the first signs I noticed were distortion in my vision, this was mainly noticeable with straight lines - I would see a "kink" in what should have been a straight line, look out for this.

[Annie69 in reply to gilpet]

Thank you gilpet.

I think a little pushy insistence is due. I can see kinks as I look out of my window here at the electricity cables over the adjoining woodland. These come and go. Time to lean on my GP I think!

Your advice is very welcome.

Ann.

[gilpet in reply to Annie69]

That's right Ann, it won't be there all the time but that is definitely a sign. I wouldn't wait for your GP, ring the hospital direct, the sooner it's diagnosed and treated the better. Any scarring caused by the wet macular degeneration is very, very unlikely to improve so don't let it get that far. If you feel upset and not strong enough to speak to them yourself then get somebody else to ring on your behalf. Good Luck and let me know how you get on. Gill

[Annie69 in reply to gilpet]

Hi Gill. Thank you for your concern. I will get onto it on Monday. I'll let you know what happens. Annx

[Hidden in reply to Annie69]

Hi annie69, hope things are going well for you. Just to say, high st opticians do look out for your eye health, its part of their job. it was my local optician (at Asda !) who spotted my problem at my usual annual eye test/specs checkup and got me an emergency referral to the hospital.

Find an optician you like and they will help you keep on top of things.

Best wishes x

[tulips in reply to andy1955]

Thanks will ring macular society

[Hidden]

Hi tulips, you really must do what the Macular Society suggest, to wait until June to get your result is not right. I had the dye test and got my results within 2 weeks. The pictures they take show it right away(the nurse told me what she saw at the time), its the consultant time to review and assess and decide treatment etc that we wait for but this should not be delayed so long !

If it turns out you do need treatment then the sooner the better and you are entitled to push them if they are not following the proper guidelines. Unfortunately it seems many of us do have to make a bit of a fuss but your sight is precious and worth fighting for.

i have found once you are in the treatment plan then things go very smoothly.

it is very stressful waiting I agree. By taking positive action to push your case that may help you feel a little bit less out of control.

Of course, it may be that the dye test showed you are ok, not at immediate risk and so they may feel the long wait to actually speak to someone is acceptable clinically and they have filled the earlier appts with people who need immediate treatment - it isnt good customer service for you though and you need to know either way now! They should at least be able to tell you over the phone if the reason for the delay is because theres nothing to worry about...........

I wish you all the best, hope your wait for info isnt too much longer, a good cry can be very cathartic Ive found ! Spend the next few days doing the things you love, stay positive, and follow the Macular Society advice x

[prometheusa3b in reply to Hidden]

Good luck good advice from above x

[BasiRose]

I am guessing this is in the UK? Stressful indeed to wait until June. I had a dye test, results were immediate and there was a bleed and got injection right then. I certainly understand your stress and since I'm not familiar with treatment overseas, I can only say if it's possible to get another doctor or another hospital for a second opinion. It seems maybe they don't worry so much for the dry type since there is no treatment. In any case, stay as positive as you can and if any changes in your vision, go back immediately. Best to you!

[Greeneee]

Poor you, I know what is like. I have cryed so much my tear drops have dryed up.

I had my second dye test yesterday, but I only have to wait until Wednesday. I should know then if the treatment has worked. Try phoning the hospital. I heard nothing for ages after my 1st dye test, I phoned and they gave me an appointment for the next day

best of luck

[rosyG]

I do agree with the comments so far.Please press to be seen soon as the treatments are very good if done in time

[prometheusa3b in reply to rosyG]

I too have had dry macular for about 6 years so I am looking out for any signs of wet macular like distorted lines, blurry spots or any change at all in my vision. Good luck x

[tulips]

Went to hospital last week and was told I still have dry eye macular but both eyes have deteriorated. They are going to start monitoring me so I go back in March. It was a relief not to have wet eye it's just a shame I had to wait so long to find out.