Progression?

[maryparry]

Morning! I never seem to get any mention of how my sight is doing. I have been told that I have the most aggressive 'type' of AMD but what does that mean? What does the future hold etc.? They are so busy that I don't like to ask. x

[Hidden]

Hi maryparry, are you having treatment?

I would have thought the most aggressive type is wetamd for which you definitely need treatment, usually the injections in the eye, and you get the 1st review with a consultant or one of their team approx 6 weeks after the 3rd inj. This is when they will check how things are and tell you. After that it depends how things go (ive had 7 inj & 2 reviews so far).

If this hasnt happened for you I suggest you contact the Macular Society who can advise you. They are very good. Their website is also full of info you can access and tbey offer a buddy service where you can chat to someone who has gone/is going through the same as you.

You should also check weekly with the amsler grid, did your clinic give you one? If not they are easy to search and print off the web.

Hope you get the reassurance you need, its hard not knowing how things will go but I remind myself that none of us knows the future in any aspect of our lives and keeping some perspective helps (yes, whats happening to us is awful but not the absolute worst that can happen even if it does feel like it some days x).

Dont be afraid to ask your clinic when you will get info, they may be busy but all those

people in the waiting room probably have the same questiion and would not begrudge you the time to ask !

Best of luck.

[maryparry in reply to Hidden]

What a lovely reply! Thank you so much, I feel better already. I don't find people that are that receptive to chats but ...hey I'll give it a go! I feel like everyone is different so only one's own consultant can give a true prognosis but... too bust to ask.x

[Hidden in reply to maryparry]

☺ Yes, its only at the formal review when they do the oct etc they can tell how you are doing, whens your next review? I have 6 weeks to wait for mine. I asked why tney dont do it sooner and they say its because you can get a false result if the inj is still in its working phase (ie they will not see what the eye itself is doing as its masked by the positive effect of the inj). The inj just stabilise things, we need the eye to sort itself. Patience has never been one of my strong points lol x

[180164]

Hi. Do u have the wet or dry. Have u had any treatments. Has your sight deteriorated. Look forward to your reply.

[maryparry]

Okay, I have a scan every time I go, I have wet AMD in my left eye so the type of amd is what is aggressive, you don't get injections for dry amd. The reason for the injections is to dry up the leaking blood vessels, I think. I have had 5 in my right eye which has stabilised and 6 in my left which was clear when I started with this 15 months ago. I need to know about progression (thinking of having 3 months in Spain) so I asked if it was possible to skip an inj?NO NO NO because I have the most aggressive type of AMD. My sight on the amsler grid does seem to vary a lot, but lots of wavy lines and blurring.

[Beldie in reply to maryparry]

Hello maryparry

This is just to say how sorry I am about the confusion surrounding your future. All I can do is repeat the advice about contacting the Macular Society. I suppose the eye specialists cannot forecast too far ahead, given the wide range of possible outcomes and I think one of the most difficult things to come to terms with in wet AMD is the uncertainty.

Best wishes for the days ahead.

[cruising]

Hello, please ask someone about anything you are worried about. The staff would rather you ask them and you get accurate information than ask other patients who really don't know. I've had over 40 injections since I first attended the clinic and am so thankful that I have been able to have treatment as it hasn't always been available. I am an avid reader so my life would have been quite different. Thank goodness for the NHS!!

[Beldie in reply to cruising]

Hello cruising

Hope you don't mind my sneaking into your reply to maryparry but I was very interested in it; reading to me is almost like life itself so....could I ask whether your AMD is in both eyes, and how much you are able to read - a 400-page novel for instance? A magazine article? Do you need to use large print books? I'm just waiting for a trip to the Eye Clinic since finding Amsler distortions a few days ago in my second eye - the one I currently use to read with, so I'm a bit anxious about the future. And there are so many books still to read!

Your 40 injections sound as if you've had a great deal to cope with - ten times more than I've had, so I'm not complaining. And as you say, thank goodness for the NHS.

Best wishes

[cruising in reply to Beldie]

Hello, I have wet AMD in one eye and dry in the other. I can read everything I want to. Sometimes the newspaper needs a bit more concentration but if I have a bright light I am ok. I read all my books on my Kindle and I can alter the size of the print quite easily. I attend York hospital and the staff. from consultants to office staff are great so I don't feel as though I have a lot to put up with, it's only a few hours every seven weeks. Lovely to chat with you, take care.

[Beldie in reply to Beldie]

Hello

Thanks so much for your reply; I am very pleased to hear that you can read everything you want to. Long may that continue. It's the possibility of wet AMD in both eyes that I'm worrying about - but I do need to exercise patience until the latest problem is diagnosed. I too use a Kindle and that will be my fall-back position.

Best wishes

[maryparry]

I, too, am an avid reader and an avid admirer of my grandchildrens' beautiful faces and the beauty of our countryside-our sight is so precious. You are right of course about asking the professionals but, seriously last time I went the consultant said to the nurse,very irritated, this is too many injections for me to do in one day and he hadn't even had a cup of tea. He is lovely but I feel unable to ask more of him when he is so stretched. I will ask the optometrist next time I;m there. Thank you.

[cruising in reply to maryparry]

Hello yes it's amazing how busy the clinics are. The optometrist are very good at explaining things so that is a good idea. Hope. you continue to keep well. Take care.

[180164]

I too have wet and in both eyes plus central serous retinopathy. I have had 7 pdt treatments (visudyne therspy). Told my problems were too severe for the lucintus injection s.

[maryparry in reply to 180164]

Oh how blooming wretched! I have never heard of visudyne therapy. I am so sorry to hear your troubles. Hope some good luck comes your way.

[Rosalyn-helpline Partner]

Dear maryparry,

In terms of your comment that "I have been told that I have the most aggressive 'type' of AMD but what does that mean? What does the future hold etc.? They are so busy that I don't like to ask" it may be a good idea to ring your ophthalmologist's secretary and address any questions directly to them. They will refer your questions on to the ophthalmologist and either they or the ophthalmologist will come back with a response. Obviously they have access to your medical records, so they can give you specific information which relates to your eyes in particular.

I hope that this is of some assistance.

Please do not hesitate to contact us on the Macular Society helpline if you would like to discuss things further. We are open 9am - 5pm Monday to Friday, telephone number:

0300 3030 111

Kind regards,

Rosalyn-helpline

[maryparry]

Thank you so much Rosalyn. I will take your advice.