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Early Macular Degeneration - Any Advice?

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  • edited 5 April at 9:05PM
    LouLouLouLou Forumite
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    edited 5 April at 9:05PM
    Mickey666 said:
    I would have thought the optician should have referred you to the eye department in hospital if they suspect  macular degeneration. I definitely think you need to speak to your GP. 
    This^^^^
    Speak to your GP by all means but in my experience they will say they cannot refer you directly to an eye clinic.  You'll need an optician to refer you.

    I'd go back to the original optician and ask them for a referral.  If they refuse then I'd go to another optician.
    Thanks for all replies. I asked if I could be referred anywhere and the optician said only if I was, say, in my 80s (not sure what my age has to do with it, surely it's the diagnosis that counts?).

    It may well be that my doctor's hands are tied and he can't refer me without an optician's say-so but I'll have a chat tomorrow. If not, I'll try a different optician. Hopefully have some sort of plan in action tomorrow.

    It's the vagueness that's doing my head in - the optician's mood was quite upbeat and I was ignorant of its real meaning initially, so I mirrored her mood. Till I got home and Googled it!
  • Torry_QuineTorry_Quine Forumite
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    LouLou said:
    Mickey666 said:
    I would have thought the optician should have referred you to the eye department in hospital if they suspect  macular degeneration. I definitely think you need to speak to your GP. 
    This^^^^
    Speak to your GP by all means but in my experience they will say they cannot refer you directly to an eye clinic.  You'll need an optician to refer you.

    I'd go back to the original optician and ask them for a referral.  If they refuse then I'd go to another optician.
    Thanks for all replies. I asked if I could be referred anywhere and the optician said only if I was, say, in my 80s (not sure what my age has to do with it, surely it's the diagnosis that counts?).

    It may well be that my doctor's hands are tied and he can't refer me without an optician's say-so but I'll have a chat tomorrow. If not, I'll try a different optician. Hopefully have some sort of plan in action tomorrow.

    It's the vagueness that's doing my head in - the optician's mood was quite upbeat and I was ignorant of its real meaning initially, so I mirrored her mood. Till I got home and Googled it!
    I think the age should make it make it more that a referral is needed not less. I really hope you get this sorted. 
    Lost my soulmate so life is empty.

    I can bear pain myself, he said softly, but I couldna bear yours. That would take more strength than I have -
    Diana Gabaldon, Outlander
  • edited 6 April at 7:49PM
    LouLouLouLou Forumite
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    edited 6 April at 7:49PM
    Mickey666 said:
    I would have thought the optician should have referred you to the eye department in hospital if they suspect  macular degeneration. I definitely think you need to speak to your GP. 
    This^^^^
    Speak to your GP by all means but in my experience they will say they cannot refer you directly to an eye clinic.  You'll need an optician to refer you.

    I'd go back to the original optician and ask them for a referral.  If they refuse then I'd go to another optician.
    Sure enough, when I phoned my GP the receptionist confirmed they can't do anything unless an optician specifically referred me to a specialist.

    So, I phoned another optician locally and I could hear the assistant discussing what I told her - at first she thought I wanted another eye test, which would cost £40-ish. But as it's just a look at my right eye I'm entitled to a second opinion free. Will see someone next Tuesday.

    Edit: Also, I should mention that the optician did appear to AGREE with the first optician's point of view. That once it's diagnosed there's not really much they can do and it's about managing it/lifestyle recommendations. I don't know what his opinion was about the two-yearly sight tests, though.
  • Torry_QuineTorry_Quine Forumite
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    Did they even say which type? There's treatment for one type.
    Lost my soulmate so life is empty.

    I can bear pain myself, he said softly, but I couldna bear yours. That would take more strength than I have -
    Diana Gabaldon, Outlander
  • edited 6 April at 8:37PM
    LouLouLouLou Forumite
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    edited 6 April at 8:37PM
    Did they even say which type? There's treatment for one type.
    I didn't realise there were two types till I started reading about it a few weeks ago (after my initial diagnosis/eye test). Wet or dry. Wet, as I understand it, progresses rapidly and needs quick intervention. Actually forgot to ask that question last week when I phoned back about the 3D scan!

    Weirdly the first optician didn't mention which type at all - so I've made the assumption (as the other optometrist I spoke to today asked me too - and as the initial optometrist seems quite laid back about it all) - that it's dry.
  • SncjwSncjw Forumite
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    Have they said if it's dry or wet amd.

    Dry there is no treatment for it yet. It's still being researched.

    Wet there is treatments which involve regular injections to the eye
     Treatment will be based on assessment every now and then. You could have longer time between treatments in one period but shorter for another.

    My local hospital does hold assessment clinics to determine if its dry or wet to determine treatment.

    Your optician would usually contact your gp for them to make a refferal unless it's mega urgent tjey woild. Likely send you direct to the hospital.

    AMD does affect the older generation more but there are some younger people who have it. 
  • LouLouLouLou Forumite
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    Sncjw said:
    Have they said if it's dry or wet amd.

    Dry there is no treatment for it yet. It's still being researched.

    Wet there is treatments which involve regular injections to the eye
     Treatment will be based on assessment every now and then. You could have longer time between treatments in one period but shorter for another.

    My local hospital does hold assessment clinics to determine if its dry or wet to determine treatment.

    Your optician would usually contact your gp for them to make a refferal unless it's mega urgent tjey woild. Likely send you direct to the hospital.

    AMD does affect the older generation more but there are some younger people who have it. 
    As mentioned, it's not been said what "type" but as the optician seems so casual about it all I'd assume it's dry. There's no referral being offered, just "come back when your eyesight gets distorted/see you in two years". Which is why I'm seeking a second opinion.

  • PterionPterionPterionPterion Forumite
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    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. 
  • edited 7 April at 1:00AM
    LouLouLouLou Forumite
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    edited 7 April at 1:00AM
    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...
  • pollypennypollypenny Forumite
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    Lou,lou, I forgot to tell you that I've been given a card with a grid and a black dot in the centre. I use this to check for any wobbles. 
    Member #14 of SKI-ers club

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    (Pity they are mangled by this autocorrect!)
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