1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2021 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Diabetic Retinopathy

Discussion in 'Diabetes Complications' started by WreckTangle, May 9, 2021.

  1. WreckTangle

    WreckTangle · Member

    Messages:
    9
    Likes Received:
    0
    Trophy Points:
    1
    I have recently been told I have "sight-threatening diabetic retinopathy" after my recent Diabetic Eye Screening test. I want to know what other treatment there is other than laser eye surgery as I really do not want to have that because I do not like anything around my eyes. I can't even use eye drops without squirming around. I am type one. I am also worried that my diabetes team is going to blame me. Even though for five years I have repeatedly asked them for help and support and they haven't gave me an ounce of it. I've been emailing them for help but no replies. I am still waiting a month on from my last email to them.

    Can anyone help?
     
  2. searley

    searley Type 1 · Moderator
    Staff Member

    Messages:
    1,537
    Likes Received:
    582
    Trophy Points:
    173
    I think on this one you’d have to take advice from the eye specialist

    If they are saying laser is the only option then you have to accept that or accept that you will lose your sight

    As for the other diabetic issues if you are not getting a response from the consultants the goto you gp and request an urgent referral they may take more notice
     
  3. MrsA2

    MrsA2 Type 2 · Well-Known Member

    Messages:
    2,083
    Likes Received:
    2,674
    Trophy Points:
    198
    @WreckTangle
    I have had eye lasers 3 times now (for a genetic condition so it's not always diabetes related). It doesn't hurt and is no more than leaning into some of the other' looking into the eye' equipment they use. It doesn't touch the eye.

    My hubby hates his eyes being touched and, yes I've had to sit on him in the floor to get eyedrops in, but when push came to shove at the eye hospital he sat there good as gold for his consultant. After I asked him why he didn't make a todo and he said "because I knew it was serious and important ", and I'd urge you to take the same attitude and be brave.

    I don't want to lose any more of my sight and will do whatever it takes to keep it. If that is surgery so be it. Life with limited sight is limited life. If you have a chance of saving it then do, please.
    Let me know if I can tell you any more, trust me it is easy and painless
     
    • Like Like x 2
  4. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

    Messages:
    816
    Likes Received:
    1,134
    Trophy Points:
    178
    This is from my student days at King's London:

    Both my eyes had haemorrhaged more than once, and I experienced several sessions of photocoagulation. On the first occasion, in 1979, I was admitted as an in-patient. It was decided that I should be in full control of my faculties. My head was placed in a stirrup and grease was applied to my eye, so that a lens could be applied for a magnified view of my retina. I was petrified. When the first laser burn made its mark, I was surprised that I wasn’t in agony. It was comparable to somebody flicking their finger-tip against the side of my hand, therefore uncomfortable and irritating.
    It is worth bearing in mind that this was very early on in the grand scheme of photocoagulation. By 1983 it was already improving. I agree entirely with @MrsA2 's advice. I only need reading glasses nearly 40 years later.
     
    • Like Like x 2
  5. DiabeticDi

    DiabeticDi Type 1 · Well-Known Member

    Messages:
    159
    Likes Received:
    18
    Trophy Points:
    38
     
  6. DiabeticDi

    DiabeticDi Type 1 · Well-Known Member

    Messages:
    159
    Likes Received:
    18
    Trophy Points:
    38
    Hi

    Unfortunately if you already have some retinopathy then laser is in my experience the only solution to seal up the leaky blood vessels. I am a prime example of what can happen... I had loads of laser and ended up with lots of scarring, had 2 vitrectomies to clear all the **** left in my eyes and 20 years later am partially sighted.

    Having laser but still continuing to have poor glucose levels does not save your vision...I continued having laser after laser thinking that that would save mu vision and it didn't.

    If you look after your blood glucose levels NOW, you will avoid more and more laser and ending u like me. Sorry don't mean to scare you, and the thought of laser scares you to death, but a bit of laser is nothing compared to being without your vision.

    Sorry if I sound preachy and like a doom merchant but I so want to make people aware what can happen down the line x
     
  7. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

    Messages:
    2,953
    Likes Received:
    1,789
    Trophy Points:
    198
    So sorry you have this worry. I had sight damaging retinopathy 18 years ago but at that time my only options were laser treatments (not surgery) and then a bilateral vitrectomy (the operation that took away the bleeds from my eyes which I needed after the prior treatments did not work).
    Laser is not surgery and it isn't painful just a little uncomfortable. The other option (losing your eyesight) is surely worse. I was faced with this prospect and then I had a retinal bleed which left me effectively blind prior to treatment. I was really unlucky I hasten to add and for you the laser treatments or whatever they offer you could prevent all of that.
    I know this is 'hobson's choice' and you're right to feel angry with the team if you felt they didn't help you. Type 1 is tough and sometimes our control isn't within our control for whatever reason (mine was pregnancy and an eating disorder) and some people can get away with worse control without complications. Please don't let the guilt/anger/fear stop you from saving your sight nor stop you from improving your blood sugars. Now you've got a complication, you should get access to a consultant as your case is more complex. We all know it isn't easy but things are getting better technology wise for type 1s.
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook