Eye hospital referral

Hi everyone,

My mum had a (very overdue) eye test a week and a bit ago and the optician referred her to moorfields eye hospital in London on an urgent basis (she hasn't got an appointment yet though). They have given her an amsler grid to do every day and told her if she gets flashing lights to go in asap. They mentioned something like putting dye in her veins and vitreous something or another along with a retina shadow. Anyway she is worried sick and is practically planning her funeral now. My ex is an optometrist he said this sounds like the onset of Wet Macular degeneration 😞. Is there anyone else out there who has experienced this?

15 Replies

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  • Hi Badgers,

    Tell your mum to forget about the funeral. At the opticians you are like being on a conveyor belt; they do not take the time to explain things. Im am not surprised your mum is worried. Our eyes are precious and when we are suddenly faced with a serious problem we panic. Most of us have been there and understand how she feels. We are all here ready to support her.

    And yes, it sounds like she has AMD, possibly wet, and she should be seen at the eye clinic as soon as possible where they will do a number of tests. The dye you mention is called fluoresein and is injected into a vein. It enables the ophalmologist to see if there is any bleeding or leakage behind or onto the macula. It is a standard procedure when wet AMD is suspected and is nothing to worry about.

    If you contact the Macular Society they will be able to give your mum all the information she needs for now and will help her to feel a little easier. I think that not knowing what is going on and not understanding the condition is initially the worst part of it.

    Best wishes and a big hug for your mum. I am sure she will be fine, as things are seldom as bad as we first imagine.

  • Hi ayayay, looks like we were typing at the same time lol x

  • Beaten you to it, eyesright. Haha. Have been up since 3 this morning. Couldn't sleep.

  • Thank you Ayayay!

    She is convinced they have referred her for like a brain tumour or something and that this is the end. A friend of mine had a suspected Brain tumour from an eye exam and they basically sent him to hospital on the same day so I don't think it's that as they would have referred her to a more appropriate hospital. She has a massive fear of anything medical due to losing her own mum so young from cancer so this is a very scary thing for her and she is not in a good place right now. 😞

    Badger

  • That is so sad and also understandable that she is scared. You are right though, Badger, if anything other than eye problem had been suspected she would have been referred to an appropriate clinic at the same time. One of my friends was sent to a stroke clinic - false alarm, luckily.

  • Hi badgers,

    If your mum was given an urgent referral guidelines say she should be seen within 2 weeks. Suggest you ring moorfields to expedite things. Or ring the macular society and they will help you.

    There are lots of eye conditions with similar symptoms. Often with the same treatments too.

    I had the dye (fluoroscein angiography) which is a diagnostic tool - it shows up any blockages in eye vessels. Very simple procedure, they inject the arm and quickly take special pics of eye which shows if any blockage (basically a stroke in the eye). They have a nurse at hand in case of allergic reaction (v rare) and after your vision is a bit colour tinged until the dye is excreted in a day or so. Honestly, it's fine.

    I understand why your mum is panicking. Any suggestion we might be losing our sight is terrifying. The important thing is to press for the appt asap, and if the amsler shows any distortion or change then don't wait, go straight to a&e.

    Once your mum gets a diagnosis she can start to deal with her condition. Some are very slow acting, others more acute but there are things that can be done to help.

    The Mac Soc are great. Lots of info, guidance and support. Plus they have a buddy system and counselling so your mum will not be alone.

    Do come back to this forum once you have more info - we support each other and will help you any way we can.

    Wishing you both all the best going forward. Sending hugs xx

  • Thank you eyesright! She is just so worried and so are we all! X

  • Easier said than done but try to relax. Stress doesn't help (raised bp). Focus the energy on getting a diagnosis quickly.

    Also. Things are relatively good right now -dont let the worry of an unknown tomorrow spoil a good today. Xx

  • Dear Badgers2017,

    If an 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. This therefore indicates the urgency of the situation.

    Treatment is usually via injection. The function of the injections is to suppress the abnormal blood vessels, stabilise the eye, maintain vision and prevent further damage. Usually, an initial loading dose of 3 injections is given, once a month for 3 months, then the eye is reviewed. If further injections are needed, then how far apart the subsequent ones are needed is determined by whether an individual is having Lucentis or Eylea injections.

    It is important that you chase up the appointment with the hospital. If it looks like there are going to be any delays, please contact us on the Macular Society helpline as soon as possible for further discussion.

    I am copying links to our Guide to AMD:

    macularsociety.org/sites/de...

    Treatments:

    macularsociety.org/sites/de...

    and our Essential guide to wet AMD:

    macularsociety.org/sites/de...

    Just to make you aware, the impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service. Please contact us for further details if this is of interest. We need the individual’s verbal consent in order to be able to refer them. It takes the lead counsellor a maximum of a week to make the initial call. Our counsellors are fully trained and the majority have sight loss themselves. Sessions consist of approximately 6 of around 45-50 minutes each. I am copying links to our booklets on Emotional impact, which references the counselling service and also our booklet, Supporting someone:

    macularsociety.org/sites/de...

    macularsociety.org/sites/de...

    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 your mother would like to benefit from this, or join via the following link:

    macularsociety.org/6months

    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,

    Macular Society helpline

  • Thank you so much for this advice! I will let her know. She tends to bury her head in the sand with things like this though so it's not a good combination. She is very frightened of things like this and my biggest fear is that she will just not turn up to her appointment. She would benefit hugely from counselling but would never admit she needed it.:(

    It sounds like the macular society is amazing and really helps people to deal with AMD and other issues.

  • Dear Badgers2017,

    The best form of defence against wet AMD is rapid action. If your mother does have wet AMD, then the earlier that she has treatment the better. Unfortunately, if the eye is left, then potentially scarring can occur, which cannot be reversed. The worst case scenario is central vision loss. The injections are usually quite effective at holding the eye. It is essential that her appointment is chased up and that if she does have wet AMD, that she receives the treatment as soon as possible for the best possible outcome.

    We have injection buddies. This may be of help if it emerges that she does have wet AMD. They are individuals that have had the injections and have volunteered to talk to anyone who is concerned about having their first one. They can be contacted via us on the Helpline.

    Kind regards,

    Macular Society helpline

    0300 3030 111

  • Such good advice on here, just reassure your mum and give her a hug.

  • Thanks for everyone's help. No news yet but apparently the optician said the problem was in her right eye and they weren't too worried about her left eye. I assume this would rule out AMD then as I read it only affects both eyes at the same time?

  • Wet AMD can occur in only one eye - as in my case. I'm having Eylea injections at Moorfields (I'm going for my fourth tomorrow).

    I find the injections unpleasant, but not as bad as having a tooth filled - and nowhere near as bad as root canal treatment!

    The drops to dilate the pupil sting and whilst the injection itself is not painful as such, it produces a momentary unpleasant dull ache.

    Hope this helps.

    Jim

  • I was told by my optician during a routine eye test I had a hemorrhage in my right eye and referred to eye clinic I was seen within two weeks and had eye test and eye scan both simple procedures. The bleeding had stopped by then. I was informed I had wet amd but didn't require treatment ,since then almost a year now I have a scan of my eyes every two months and use an amsler grid once a week . So far I have been clear thank God hope your mother is as fortunate .

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