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Early Macular Degeneration - Any Advice?

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  • PterionPterionPterionPterion Forumite
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    LouLou said:
    Not sure if you've had a second opinion yet but here are my two cents and some important aspects which I think need clarifying. 

    Macula degeneration is age related deterioration of the macula region within the retina. This is the area responsible for central and fine vision. There are two types.

    Wet is spontaneously presenting and threatening which requires urgent treatment. Although treatment is available, there is likely to be some lasting damage and proactive monitoring is necessary. 
    Dry progresses much slower over years and is incurable. 

    Risk factors/advice: cease smoking, avoid excess UV light by wearing sunglasses, eating a healthy diet with colourful fruits and leafy greens (esp kale and spinach). There are supplements available supported by valid research but they can be expensive and the extent to which progression can be slowed is limited. An annual eye exam is sometimes indicated but this is upto the clinical judgement of the optician

    In terms of the eye test/opticians there are generally two approaches. One type of practitioner may notice early changes but not mention to the patient to prevent unnecessary worrying. Another may decide to inform the patient very early of small changes to prevent a shock later down the line. 

    With regards to what I've read so far, it appears that the optician has noticed early dry changes and confirmed this via the £10 scan offered (OCT which offers a cross section and layer by layer view of the retina). It is highly unlikely to be wet as you most probably would have noticed visual distortion, disturbance etc and urgent management would have been initiated). 

    Now onto the second opinion. Unfortunately GP's notoriously have limited internal eye training and are generally the last healthcare practitioner i personally would see for an ocular issue. Optometrists/opticians (same thing) are the eye experts. The subject of referral to eye specialists is highly controversial. Ophthalmology in the UK is in a difficult situation and is designed to diagnose, treat, monitor conditions beyond the scope of high street practice. It is not designed for clarification or a second opinion where there is a misunderstanding or lack of clear communication and advice. In this case if the optician has examined the eyes and confirmed with the scan then a referral is likely not warranted. A referral would draw the ire of an ophthalmologist, waste your time and NHS resources. Furthermore, as ophthalmologists deal with active disease management they are generally dismissive of presentations such as early dry AMD. 

    At this stage if you are deeply concerned you could call the optician you visited and ask them to change your recall to annual and ask for the signs to look out for or visit another opticians for a second opinion. 
    I'm seeking that second opinion from another optician, should be next week :)

    Edit: Sorry, tired and forgot to say thank you for your very informative post.
    This could very well be what's happening, that my regular optometrist has seen something but not commented two years ago. My vague hope is a misdiagnosis but I'm not optimistic at this point.

    In a way, I was treating the additional 3D scan/follow up call (which I didn't get - though I did phone her back) as my "second opinion" and didn't think there was anything else I could do. Which is why I came on here. It's really not in my nature to make a huge fuss and I wish I'd never heard of AMD, but...

    Hopefully the second opinion will provide reassurance and give you the opportunity to ask questions and clarify what you couldn't at the time. Although the internet is an invaluable resource for research it can often exacerbate rather than alleviate worry. Fewer people comment on good experiences than bad and the literature can be scary itself. 

    Usually when the optician diagnoses early AMD they provide diet & lifestyle advice and a pamphlet designed to answer the questions you may have. As I mentioned earlier, the approach to healthcare in the UK varies though we are moving from a paternalistic (old-fashioned tell the patient when something needs to be done) to a more shared care (involve the patient from day one). 

    Although AMD does sound scary there will be some patients who are asymptomatic their entire lives due to the slow progressing nature of dry AMD and others not so lucky. (I might be being a bit hypocritical and dramatic in explaining the worst case scenario next, but even the most severe dry AMD cases do not cause 'complete blindness'. It is the central vision which is affected, Yes, this can be devastating but remember it is a very slow progressing condition in which some patients are asymptomatic their entire lives. Note, Dry and Wet can interchange hence the need to know the current stage and what to look out for. 

    I'm sure all your questions will be answered at the appointment but personally there are three things I would seek to clarify. Firstly, does the optician feel you now have dry AMD or whether you are showings signs of 'macula changes' (e.g pigmentary changes, drusen as these do not even progress to AMD in all cases or hold a very low risk of progression. Secondly, how they would classify (Early, intermediate, late as again these indicate the risk of progression). Lastly, if in one eye or both (Not sure if you mentioned in your original post).

    And I've just realised how long my posts are.  :#

  • kirtondmkirtondm Forumite
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    Most likely explanation is you have some drusen which is a pre-curser to macula problems in the future. This will appear like little yellow blobs on the photos. If you have normal vision you don't have macula degeneration. I don't think it has been explained very well. I would personally phone the patient either way for the results of an additional test.

    If it is drusen I would not get too worried about it. You can modify diet and cease smoking no other treatment required and may never develop into macula degeneration.

    If it is macula degeneration in a 49 yead old by definition it would not be age related macula degeneration as you are too young!. You can get other forms of macula degeneration esp in myopic individuals.

    I agree I would be more likely to refer a 49 year old than an 89 year old!.

    Their is a bit of a back covering situation with some things. People feel they need to tell you if something comes up on the photo even if it is very common such as drusen.
  • pollypennypollypenny Forumite
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    I am finding the last two posts reassuring. 

    I'm hoping that my vegetarian diets, since the age of 11, and dependence on my reactions lens will prevent AMD. My grandfather, father and aunt didn't have those. 

    I truly would not be able to live without reading. And forget audiobooks, my hearing loss has scuppered that. With good writing I hear the voice in my head anyway after years of teaching English. 
    Member #14 of SKI-ers club

    Words, words, they're all we have to go by!.

    (Pity they are mangled by this autocorrect!)
  • edited 8 April at 6:52PM
    LouLouLouLou Forumite
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    edited 8 April at 6:52PM
    PterionPterion I have just read your posts now. They are so reassuring and have given me a little bit of hope. Me and my mum are joking saying I should be referred to you instead! :D I'm seeing an optician on Tuesday afternoon.

    At least I know now what to ask and what sort of prognosis I may be working with. Of course these things are never certain but hopefully I'll have more answers.
  • LouLouLouLou Forumite
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    kirtondm thank you also for your post (I read it as being from the one member, maybe I need my eyes tested again) :D
  • edited 13 April at 6:46PM
    LouLouLouLou Forumite
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    edited 13 April at 6:46PM
    Saw the "second opinion" optician this afternoon. He was very thorough and explained every step of the way. To be honest I thought he would just shine a light in my right eye/do a scan in a few minutes, but I got the full shebang, eye test and 3D scan, which was reassuring. Took a good 30-40 minutes. And it was free (I was all ready to get my credit card out to pay).

    I think he could tell I was a bit nervous (I am, by nature, anyway, that's nothing new).

    Basically, he said "I respectfully disagree" (to the original diagnosis of early macular degeneration). What he says he thinks he sees in my right eye are likely pigment changes, which could have been there since birth. He couldn't say for sure as he has no history to look back on. He said he would only be concerned if there were vision problems occurring, which there aren't, and he seemed happy with my (albeit myopic) eye examination.

    When looking at the 3D scan: he did also mention something about a retinal layer shifting (or something) but nowhere near the macula, which is to be expected with age. I asked about drusen but he didn't seem to think there was anything worrying there.

    He also recommended a two-yearly test but to come back in a few months if I'm worried about anything. I got the feeling he had to bite his lip about the chain of opticians that examined me originally :#

    To say I've been upset about this is an understatement but it's a relief to know that my eyesight isn't going to progressively get worse to the point of not being able to plan for the future....!

    Thank you all for the thoughtful replies, which stopped me pressing the panic button. But it does make me think - why do two opticians see different things (pardon the pun)?

    Ultimately, I don't think I'll be back to the first optician again.

    Edit: When I first sat in the chair, I told him the optician had asked if I saw the doorway in wavy or straight lines (I made a bit of a joke about it as I wasn't sure she was serious at the time).

    He said, "An optician wouldn't say that if the diagnosis wasn't good" !! (which made me gulp). So it wasn't the best beginning.
  • Torry_QuineTorry_Quine Forumite
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    I'm so pleased that today's appointment went well. Definitely don't go to the first place again.
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  • PterionPterionPterionPterion Forumite
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    Great news!  I feel it is not a matter of 'two opticians seeing different things' but rather two opticians seeing the same thing but interpreting and managing them differently. As one of the earlier comments mentioned, the likelihood of AMD would be very low at a younger age and other diagnoses would be be the first suggestion (myopic degeneration or pigmentary changes/differences from birth or early development). Nevertheless, I would always consider AMD as I have come across younger patients with AMD but they have been very, very few in a long career and usually with a history (UV exposure born and raised in hot countries, family history, smoking and other health conditions). In this instance it would be the last option to consider and I am happy to hear of the second opinion. 

    With regards to opticians/stores, each optician has a different approach and I would like to think that this was more a communication issue than competence. A thorough explanation initially would have helped. 

    I have always believed (many opticians may disagree) that eye tests should be conducted at the same place regardless of where you then go on to purchase glasses. I have found most of the false positive referrals I have received over the years are usually from a visit to a new/different optician where there were no previous records to compare to.

  • LouLouLouLou Forumite
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    Great news!  I feel it is not a matter of 'two opticians seeing different things' but rather two opticians seeing the same thing but interpreting and managing them differently. As one of the earlier comments mentioned, the likelihood of AMD would be very low at a younger age and other diagnoses would be be the first suggestion (myopic degeneration or pigmentary changes/differences from birth or early development). Nevertheless, I would always consider AMD as I have come across younger patients with AMD but they have been very, very few in a long career and usually with a history (UV exposure born and raised in hot countries, family history, smoking and other health conditions). In this instance it would be the last option to consider and I am happy to hear of the second opinion. 

    With regards to opticians/stores, each optician has a different approach and I would like to think that this was more a communication issue than competence. A thorough explanation initially would have helped. 

    I have always believed (many opticians may disagree) that eye tests should be conducted at the same place regardless of where you then go on to purchase glasses. I have found most of the false positive referrals I have received over the years are usually from a visit to a new/different optician where there were no previous records to compare to.

    That is an excellent point and one I've wondered about. Recently I've had "snapshot" diagnoses (two single appointments from different optometrists) rather than "bigger picture" opinions (gleaned from years of history).

    The optician I saw two days ago suggested I talk to an optometrist at the branch I've been with for over a decade (rather than a receptionist, as happened when I contacted weeks ago). He suspects, as they're franchises, that's why the first optician couldn't access older scans, even though they're from the same company.

    Of course the lady who diagnosed AMD seemed very confident of her opinion, even after the 3D scan. I do feel the lack of aftercare was a bit blasé for my liking, but my ignorance was a blessing (at the time).

    Understandably I want to be sure I'm armed with the right information. Maybe phoning my long term optical store is the way to go.

  • pollypennypollypenny Forumite
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    Great news!  I feel it is not a matter of 'two opticians seeing different things' but rather two opticians seeing the same thing but interpreting and managing them differently. As one of the earlier comments mentioned, the likelihood of AMD would be very low at a younger age and other diagnoses would be be the first suggestion (myopic degeneration or pigmentary changes/differences from birth or early development). Nevertheless, I would always consider AMD as I have come across younger patients with AMD but they have been very, very few in a long career and usually with a history (UV exposure born and raised in hot countries, family history, smoking and other health conditions). In this instance it would be the last option to consider and I am happy to hear of the second opinion. 

    With regards to opticians/stores, each optician has a different approach and I would like to think that this was more a communication issue than competence. A thorough explanation initially would have helped. 

    I have always believed (many opticians may disagree) that eye tests should be conducted at the same place regardless of where you then go on to purchase glasses. I have found most of the false positive referrals I have received over the years are usually from a visit to a new/different optician where there were no previous records to compare to.



    I'm so glad you've started posting here, Pterion.   You've been very reassuring Loulou, but also to me  that you mentioned smoking is another factor which helps - you won't be surprised to hear that the older generations all smoked.  I've never smoked. 


    Member #14 of SKI-ers club

    Words, words, they're all we have to go by!.

    (Pity they are mangled by this autocorrect!)
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