Follow-up report

[Bobbie915]

Hello All.

Six weeks ago I was told that my eyes hadn't changed for 8 months and injections were being suspended but I still need to attend the clinic for check up's. I went this week for a check up. I asked the doctor what it meant that my eyes hadn't changed and did I still have fluid? I was told that my eye sight hadn't changed over the past 8 months, which was good, but that I did still have fluid, but only a little which never seems to clear up completely. They wouldn't be too concerned unless I noticed a change on the Amsler grid. I said I was told by one of the doctors last July , that he was not happy that the treatment wasn't working for me and they would be considering changing to a different injection. This doctor confirmed that it was noted on my records. As always, I only think of the questions after I have digested what I've been told. Who makes the decision to change the injection? Does the consultant, whom I only saw on my very first visit, look at the records of how things are going?

I remember a post where someone said that the clinic only seem to be interested in whether you have fluid and not how well you do reading the chart. It appears to be the opposite for me.

[Hidden]

Hi Bobbie915, glad you are stable. It's an interesting point you raise. My clinic are wanting to stabilise the eye to preserve the sight - the amsler and eye chart are the first indicator if it's worse but I've had an ok reading where there was more fluid so had another inj.

I've had some reviews where Dr has decided what to do, some have gone off to speak to consultant to agree treatment plan (either more inj or change inj) and another where Dr told me inj not working so needed steroid implant. - had to get that Dr to read consultants plan to try other inj first!

I think they must have guidelines as to when to involve consultant, I saw a few early on. Then not for months. I expect (hope) a consultant is given casefiles to review even if we don't see them.

wonder if I will see one next week now had loading dose of new inj - I would hope so.

Might be worth asking your clinic when you can expect to see a consultant again .

[Rosalyn-helpline Partner]

Dear Bobbie915,

I am sorry to read about your concerns.

It may be advisable to ring the secretary of the ophthalmologist who is overall responsible for your care, express your concerns and pose any questions to them. This should help clarify the issues mentioned. The secretary will usually come back to you with a response on the ophthalmologist's behalf.

Please do not hesitate to contact us if we can be of any further help. The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[Ayayay80]

Hello Bobbie

It all sounds very confusing, doesn't it! Unfortunayely, there are dozens of different conditions underlying AMD and each one will respond differently in different people. I do know that fluid can remain between the choroid and Bruchs membrane causing a small detachment, a pocket, in which the fluid can just sit, as for instance in PED and can become chronic, but not necessarily cause any more sight loss. I was diagnosed with PED plus vitreo /macular traction. My consultant was not going to treat me at first, just monitor me. But 4 weeks later my eyesight had deterioated and treatment with eylea was started. I have read in the past that sometimes the fluid resolves itself within a year without treatment and that it could be rather unresponsive for this condition to VEGF, and also that there was a greater risk of macular split, hence a reluctance to treat. I can no longer find the article on the website, perhaps they have changed their mind.

5 eylea injections later my consultant said that my AMD had dried up, but does he mean it has stopped leaking or absence of fluid? I wish they would spend just 5 minutes with us and explain what the situation is right now. And hoping to get anything in writing or by phone seems impossible. I had to wait for an answer to my quiestion until I was face to face with the consultant. Oddly enough, even my GP does not get any detailed information. Apart from the original diagnosis, from which I got to know about my condition, my GP only gets to hear...responding well, ....AMD dried up, that sort of thing. What is the big secret?

But after my big moan, I guess they know what they are doing. I hope so anyway and there has been some improvement, for which I am grateful, though the lines on the Amsler grid are as distorted as ever. I hope you continue to make progress too.

All the best.

[Bobbie915]

Thanks all, for your very interesting replies. Yesterday I went to the optician for a check-up. This is the first time I have been back since the optician referred me to the hospital for suspected AMD. I feel lucky to have found an optican who is so efficient. She was very pleased with my sight, which obviously gave me a lift. I don't need to change my reading glasses! That was a bonus, money wise, as they were very expensive. She said that last time she saw me, I could only read the large letter at the top with my first affected eye. I did't remember that. Probably too stressed at the time.

Best wishes to you all.