Distorted vision in one eye from Dry ARMD – feel like I am being fobbed off

Sorry if this so long but I am just at a loss to know wha to do. I was toldeverytime I had my eyes monitored that if I saw any changes\distortions on the Amsler grid I had to go to A&E within 48 hours. When I asked the consultant if that meant I could no longer go on holidays she said if I knew that there was an eye hospital that I could go to. So for years we haven't had a holiday because of me.

A couple of years ago I noticed slight distortions on the Amsler grid and went to A&E and they said yes there was some distortion there that I did the right thing coming in and I should always come in if I noticed any changes. Then a few months ago I noticed that lamp posts and straight lines looked wavy and went to A&E and was told that there was nothing that could be done because I had dry ARMD. I started noticing that peoples' faces, bodies and legs looked distorted and reading text was wavy. I was told again that there was nothing that could be done because it was the dry type but I was told that there was fluid at the back of my eye and that there was a scar. I understood that scarring and distortion were a sign of the wet type. The consultant told me that my condition had stabilised and when I told her the distortion was worse she arranged for me to have a fluorescein angiogram, and said that I had probably had wet that had reverted back to dry and that was why I had a scar.

Went to the Eye Clinic to get the results and had waited over 1½ hours. One of the other out-patients said to go and tell someone. My husband found the optometrist just messing about with her 'phone and he said she acted like she had been caught out doing nothing and she said she'd see me. She found the Dr who gave me the result of the test and said I had dry ARMD which I already knew. When I asked if there was anything I could do about the distortion she said I could look out of the side of my eye and I said that everything looked wonky.

I was very upset to get a copy letter from the optometrist saying I had been complaining about the distortion – so if I see a change or worsening distortion am I not supposed to be concerned enough about it that I don't mention it? I just feel like I am being fobbed off, I rang the MDS and they said that eye units have to follow NICE guidelines about treatment.

29 Replies

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  • I don't know why you haven't had a holiday for years, there are hospitals everywhere in the world. It sounds as if you may have wet AMD. Is there a different eye clinic your op titis or GP could refer you to?

  • When the consultant said that I must go to A&E within 48 hours if I see any changes in my eyes, the thought of having to book a holiday abroad, after finding out if there was a hospital with an eye-unit within a realistic distance was daunting. It didn't seem very fair on my husband putting him thru that added stress. TBH I find it stressful enough getting home in this country with dilated pupils when I have to get on the bus, tube and train to get to the eye hospital urgently.

    Do you think it sounds like I have set AMD because of the distortion? because I have now been told by MS that you can have distortion with dry AMD.

  • Sounds like WET AMD but I'm only talking about my experiences. I have wet in one eye and dry and cataract in other eye! Spain, Cyprus , Italy etc all have good private clinics if you suddenly needed treatment. I travel everywhere I want to (finances permitting) as life is too short not to. I really think you need a consultation with another consultant who can hopefully explain your condition properly and be more proactive. Then book a holiday and have a great time with your husband.

  • Hi nougat

    I think you have been treated very shabbily. Someone should have explained things to you better. You probably already know that dry AMD progresses very much slower (5 to 10 years) than the wet type. Having said that, there sometimes seems to be a fine line beween dry and wet if the leakage is very minor, depending on how induvidual consultants interpret what they see. Any leakage onto the macular can cause a permanent scar and hence distortion even if the leakage dries up.

    To back up what I just said, in August 2016 a scan revealed a large swelling in my left eye, and one consultant said it was wet AMD. I was given another appointment with a different consultant who insisted I had dry AMD in both eyes despite the prominent swelling still present. Another 4 weeks later this same consultant told me we can start treatment now as my visual acuity had dropped from 20/40 to 20/60. So it was wet all the time as I had suspected. He then told me that Nice stipulated that treatment should only be given if the eye sight is worse than 20/40. I had 5 injections, then a break of 5 months and am now on treatment again. I have now permanent damage due to scarring.

    As for your holidays, please don't put your life on hold waiting for things to happen. Enjoy everything that is good in your life. I went on holiday during the sessions of monitoring. Most countries have eye clinics and you can get reasonably priced insurance, in case of the unlikely event of things suddenly going wrong.

    Best wishes

  • I am mystified why people don't name the hospital that they have these shocking ex periences at. If you will tellwhere you are and the hospital you attended then others can suggest a hospital nearby where good helpf is available. Also, if you want to travel

    somewhere you can post here too. There are people on this site that are living all over the world ;they can make suggestions of good Doctors in foreign lands too. Moreover, is you tell your travel insurance company that you have this condition you are then covered. The additional cost is usually no more than a few pounds

  • I go to the A&E at Moorfields in the City of London as they are open 24\7. The doctors, consultants and nurses are lovely. But because I don't like the journey coming back home, the tube, train and bus with dilated pupils, I decided to go to a hospital's eye clinic in Surrey which is just a short bus ride away. I don't feel very happy about naming the hospital.

    Perhaps when I have managed to get some sort of solution on this we could have a holiday.

  • Curious....Do you think the doctor that gave you the terrible service at your Surrey hospital is on this site and reading this and will immediately know who you are and therefore will be even meaner to you next time because you said the name of the hospital on this group? Just curious . On the other hand you could name the hospital and someone else will say " oh go to Blah Blah hospital - that's not far and the service is lovely!". sorry, I am not being disrespectful but it seems that a better solution might be available to you and you don't want the help.

  • The last doctor I saw said that because my visual acuity is good, 6/7.5, in the eye that has the distortion they do not want to give me any treatment.

    Sorry, I don't understand what your visual acuity 20/40 means compared to mine, when it dropped from 20/40 to 20/60. As my eye that has no distortion (I have bilateral dry) is 6/15 and that eye is amblyopic.

    I understood that if you could read the first 5 lines of the reading chart you would not be given any treatment under NICE guidelines. It is really very confusing and worrying. As I mentioned in the reply to RP1944 I have a gp appointment next week and will ask the gp and may be she can tell me what I should be asking at my next appointment at the Macula Clinic next month.

  • 20/40 = 6/12

    20/60 = 6/18

  • Ayayay80 - thanks but sorry I still don't understand how your visual acuity had dropped from 20/40 to 20/60, I think I have misunderstood.

  • My eye sight had worsened during the 4 weeks of delay due to the build up of fluid and leakage onto the macula. 20/60 or 6/18 meant that if people with normal eye sight looked at a car 18 metres away I would have to place myself 6 metres away to see the same as they do. Does that make sense to you?

  • Ayayay80 - I do understand the difference between the imperial and metric measurement ie 20/ or 6/, it is the other measurement I just did not understand when you said your visual acuity had dropped from 20/40 to 20/60. I thought that the higher that measurement became it showed an improvement in the vision. The consultant I saw said if I wore pinhole glasses my vision could be improved, only for the last doctor I saw to say that they did not improve your vision. I am very confused about what I keep being told now differs from what I was originally told. I understood that when you had the dry type, distortion and scarring was a sign that the dry had turned to wet, I am told that you can have distortion with dry, that I had scarring probably because I had had wet that had reverted back to dry. Sorry about my rambling on just trying to make sense of it all.

    I am sorry to hear your sight has worsened due to the delay you must be so upset and I won't ask you about your measurements again.

  • No problem. I know it is confusing. The patients measurements for eye sight is always taken from either 6 or 20 metes, which makes it appear that the normal VA changes when in truth it is the patients eye sight that changes. It seems back to front.

  • If I were you I would ask for a second opinion at a good eye unit

  • just read your other post- Moorfields is the best! However, you get differing opinions so could ask to see someone else at moor fields as you want to check and clear up an unclear position

  • When I go to A&E at Moorfields I see whichever doctor\consultant is available. I don't go there to have my eyes monitored there on a regular basis.

  • perhaps you could ask your GP to refer you there?

  • I have an appointment with my gp next week and I am going to ask her advice and on my next eye clinic appointment

  • Hi. I really do feel for you. It is very confusing. I have had wet in both eyes for seven years, and over the years I have been told many different things by many different doctors. I would say it you see a difference don't be afraid to go to the doctors (as many times as you want) but you have to trust them to know what they are talking about. I was due my third injection on my fifty'th birthday but they told me to go and enjoy my birthday and I had it a week later. I think it's good to talk, especially to us who are going through it. Good luck xx

  • Hi nougat, firstly sending you a hug x

    How frustrating it's been for you.

    I recommend the Benenden for travel insurance. I don't worry when abroad as the insurance will mean you can have private treatment if needed or get flown home for it (although I don't go anywhere very remote or 3rd world).

    Re them mentioning you "complaining" - that's just med speak for you telling them! Don't take it as a slur.

    I would personally raise a complaint with PALS (your hospital will have one) and ask for someone to explain about the fluid you had and why this wasn't addressed at the time. I thought fluid was what differentiated the two types. It's easy, they are very nice and you should get a useful response. When I complained I also got a very nice apology.

    I understand about convenience re travelling, feel the same myself, but it's your sight and you need the best team you can find. I'm currently waiting on a review and may be pushing myself to go to moorfields from Wiltshire if things don't go well.

    Hope you get some answers from your gp (ask if there's another surrey hospital?).

    Best wishes going forward x

  • Eyesright -thanks very much for the Benenden recommendation and explaining what "complaining" meant - because I had taken it as a slur.

    When I had previously had an angiogram at Moorfields, the consultant's copy letter stated that there was no intraretinal or subretinal fluids which indicated that I did not have the wet type and he spent time reassuring me (he nearly had me in tears he was so lovely). But this last time at my local hospital the doctor didn't just told me I had dry, which I knew already and did not copy letter me.

    I do wonder if some practitioners just either don't know or just haven't got the time, inclination or expertise to talk to you like you matter.

    If you can get a referral to Moorfields do, it is a centre of excellence.

  • Kimkar001 - Nearly all the consultants I have seen i have trusted them. But since I noticed this distortion in in one of my eyes I am at a loss to understand what I am being told. I was always told if I saw any changes\distortions on the amsler grid I had to go to A&E within 48 hours. I also understood that signs of wet ARMD was fluid in the back of the eye, scarring and distortion. I was told that my condition had stabilised but it hasn't the distortion has got worse and on the strength of that the consultant arranged for me to have a fluorescein angiogram. I was told that I probably had had wet ARMD but it reverted back to dry and that why I had a scar that was causing the distortion. I have been asked why I have the scar, been told that the scar is old scar tissue and means nothing and now I am now being told that you can have distortion with dry and there is no treatment. Sorry if I have gone on a bit.

  • Hi nougat, speak to the Macular Society. I believe there are supplements you can take for md which are recommend to help keep eyesight healthy I think they are Areds2. Can't hurt.

    I don't have md but I do take Macushield which my gp prescribes at the moment. Boots sell them (pricey so wait for the 3 for 2 offers).

    Mac Soc can explain about them too. They also have counselling and buddies who know what you're going through if you need to talk it out. X

  • Hi eyesright, I have spoken to MS and they told me that eye units have to follow the NICE guidelines that is based on you being able to read the first five lines of the Eye Test Chart and they also told me that you can have distortion with dry ARMD.

    Yes I I buy the 3 for 2 offers for Macushield Gold (AREDS 2)

    Thanks very much for all your very good advice eyesright.

  • Dear nougat,

    I am sorry to read of your concerns.

    Do you check an Amsler grid on a weekly basis? If there are any changes from one week to the next, then this indicates that you must get your eyes checked in case wet AMD is developing.

    As an alternative to attending A&E, you could consider attending the opticians next time. If the optometrist identifies possible wet AMD, then the Royal College of Ophthalmology guidelines indicate that they must do a fast track referral on the day of the appointment, via fax or email, straight through to the eye clinic, so that the individual can be seen and treated by 2 weeks.

    10-15% of people with the dry type go on to develop wet AMD in the same eye. Therefore it is important that if an individual does notice any sudden eye changes, that they act rapidly and either go to the optometrist so that they can check behind their eyes or the emergency eye clinic at a hospital.

    I am copying links to our Guide to AMD, and our essential guides to wet and dry AMD:

    macularsociety.org/sites/de...

    macularsociety.org/sites/de...

    macularsociety.org/sites/de...

    In terms of holidays, yes, it is worth doing a bit of research beforehand and establishing the location of the nearest emergency eye clinic. This is relatively easy to do in this country. Doing this may make you feel a bit more confident about going.

    Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:

    macularsociety.org/6months

    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:

    help@macularsociety.org

    Kind regards,

  • Rosalyn, thank for your reply and I am already a member. Sorry if my reply is long but I am very confused about getting so many conflicting answers. I have contacted MS about this by phone and was told that you can get distortions with the dry type and that eye hospitals have to follow the NICE guidelines in that if you can read the first five lines of the Eye Test Chart you will not receive treatment. I didn't know that you had to lose more of your sight before you could be treated. I was always told when I used to have my eyes monitored that if I saw any distortions I should go to A&E within 48 hours. I have done that only to be told that they could see the distortions and I had done the right thing going to A&E and if I saw any changes/distortions to go back. I have been told that my condition was stabilising, but for me the distortions have worsened and I had a fluorescein angiography and told that I had dry, which I knew. I am just very confused about being told I have scarring at the back of the eye and that was causing the distortions, when I thought that scarring and distortions were a sign of the wet type and that I probably had had the wet type which had reverted back to dry. I didn't know that you could have dry that turned to wet and scarring and then reverted back to dry again.

  • I have dry - I have distortions.

    I am confused as to why you are confused. I admit it sucks. But sounds like you are getting Super stressed and although the Macular society have told you this and also many Doctors you don't believe them.

    You can have treatment for sight loss (wet) before it reaches the NICE criteria. You just have to pay for it. ( I do notice I just said JUST). If you have medical insurance you can claim on that too. Do you go monthly for check ups at the surrey hospital or do you just go regularly to A and E? A regular checkbup might be better.

  • Does anybody get the impression that having dry macular degeneration

    Is ,no problem,it will take years before anytime goes wrong and after all

    you will not go blind only loose your central vision!!!!!.

    I was very frightened when I found out but now I keep it to myself about

    my condition and wait for things to happen to my sight.I have cataracts in both

    eyes that,will be attended too at a later date. Great stuff.Talk about go away

    and get on with it. Sympathy. understanding. None.

  • Boxnow174 - When I was first diagnosed with dry - I didn't understand what it was because I had never heard of it. i think that some medical practitioners feel very awkward about talking to you about it perhaps because they don't have the time, expertise, empathy or just do not want to worry you. Others just treat you with pity bordering on contempt. I, like you, have kept it to myself, only my husband and my older sister (who was diagnosed with dry a good few years after me) knows. It is only since I started this thread that I have opened up about it.

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