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An update

Discussion in 'Diabetic Retinopathy' started by gwai84, Feb 20, 2020.

  1. gwai84

    gwai84 Type 1 · Member

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    A couple of years ago I was having a very rough time, having developed aggressive proliferative retinopathy out of nowhere. I wasn’t getting much info from the eye hospital and I was a big ball of anxiety, utterly convinced I would go blind. This forum was such a huge help to me then, and I thought I should post an update - especially for people who are in the situation now that I was in then.

    It was definitely a stormy few years eye-wise - every time I went back to the ophthalmologists, my blind spots in the left eye were getting bigger, and the new vessels kept getting worse. The same thing developed in the other eye too. I was being seen every 4-6 weeks, and had twelve sessions of laser in all (including two under general anaesthetic). But whilst I didn’t have any bleeds, the new vessels just kept on growing, despite perfect BGs and BP.

    And then, suddenly, about eighteen months in, something changed.

    The new vessels began to regress and have now shrivelled up almost completely. I’ve just been discharged back to routine six-month follow up.

    Better than that, I still have 6/6 vision and other than one tiny little blind spot in one eye, I can see perfectly.

    At several points things got very very dark and sad, and I didn’t believe that it could possibly get better. Especially when most of the stories I read were bad outcomes - people seem not to share positive outcomes as often (or perhaps the bad ones were all that stuck in my head!).

    So this is why I’m posting. If anything like this happens to you, hang in there. There’s a very very good chance things will get better. Everyone here is rooting for you - the forum was a big help for me - and don’t be afraid to ask questions!

    - the end -
     
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  2. Sosgez

    Sosgez Type 2 · Well-Known Member

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    What was your BG, if you don't mind me asking?
     
  3. Antje77

    Antje77 LADA · Moderator
    Staff Member

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    What a wonderful update, @gwai84 !
     
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  4. gwai84

    gwai84 Type 1 · Member

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    A1Cs 6-7%
     
  5. gwai84

    gwai84 Type 1 · Member

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    (Though they weren’t quite that good before!)
     
  6. Sosgez

    Sosgez Type 2 · Well-Known Member

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    Well, I'm delighted to hear this can happen, but surely its rare.. I'm in that range now, but was 5% previously.
    I've lost confidence in the Ophthalmic people, as of a year ago, and I would love a different DSN too.
    i.e. a more co-operative one.
     
  7. gwai84

    gwai84 Type 1 · Member

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    I don’t think it’s rare. All the comments people sent me, and what my ophth team told me, was accurate - that things are rough for a couple of years, but it normally settles down eventually. Even with proliferative disease >90% of people keep their vision with the right treatment - I found this hard to keep sight of when things got rough though, and fixated on the minority who don’t. Obviously I’m still not out of the woods yet either, I’ll be on six monthly monitoring for at least the next few years. But I wanted to put something positive out there, because until I asked for advice here all I read (and remembered) were horror stories and worst-case scenarios.
     
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  8. DCUKMod

    DCUKMod I reversed my Type 2 · Master
    Staff Member Administrator

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    Sosgez, you could ask to be referred to another clinic. It happens, thankfully not too often, that for some reason the relationship and trust between a person and their health care team breaks down. Unfortunately, trust and belief in advisers and treatment can have an impact of the outcomes a person experiences. Under the NHS, everyone is entitled to a second opinion on any treatment or advice they are given/offered.

    I believe the process would be to ask your GP for a referral to another clinic, but the onus would really be upon you to chosse which clinic that would be. In my view, that means you need to research other clinics and clinicians and see where you consider your needs would be met best, and build your case.

    The only thing I will say is, although we read many fabulous posts on here of great relationships in fantastic clinics, these relationships are all very personal. A bit like hairdressers - one man or woman's magician is another's nightmare.

    In your shoes, if I felt I was not receiving the care I deserved, I would look out for groups locally - maybe even a Diabetes UK group, where you would have the opportunity to meet with and talk to others living with this condition in your area and recieve their feedback on what they find.

    I'd hate to think of anyone climbing our of the frying pan, only to land right in the heart of the fire.

    Good luck with it all.
     
  9. Geordie_P

    Geordie_P Type 2 · Well-Known Member

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    Great update- very encouraging!
     
  10. PDR T2

    PDR T2 · Member

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    Hello @gwai84 - Glad you are doing well. Not sure if you are still on this forum but i am literally going through the same thing you are describing above. going through tough times for sure / sad / upset. The blind spot you mention above is for sure a concern for me. I have a big one in might right eye and small one in left .. from your experience .. do they get smaller? go away?
    Did you vision get worse at start of treatment and then better as you went with it? Please let me know when you have a minute. Thanks,
     
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    #10 PDR T2, Oct 6, 2020 at 9:41 PM
    Last edited: Oct 7, 2020
  11. Geordie_P

    Geordie_P Type 2 · Well-Known Member

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    Sorry PDR2, you meant to reply to gwai84 at the top of the thread. Still, I actually know a little about your question because my father, also diabetic, had fairly extensive and recurrent retinopathy with eye-bleeds. His vision was gone in one eye and poor in the other, but a programme of laser treatment got him back to his normal level of vision. The repair and recovery took some time, but nothing excessive, given the circumstances, and he said the treatment itself wasn't particularly grueling. Different people will obviously have different experiences, but from what I have seen, the treatment can be effective and the recovery doesn't need to be too arduous. I'd certainly encourage you to keep your spirit up and talk to the relevant medical professionals if you can. There's quite a lot that can be done with regards to helping this condition. Good luck!
     
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  12. PDR T2

    PDR T2 · Member

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    Thank you so much for info. Did your dad have PDR? Proliferative diabetic retinopathy?
     
  13. gwai84

    gwai84 Type 1 · Member

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    Hi there,
    Hope things are going OK your end. Sorry for the delay in replying!
    The blind spots (one medium, one small) have stayed - no bigger, but no smaller. If the blind spots are because of small bleeds, they can resolve as the blood is reabsorbed, but this isn't the case with me. Mine are because of small areas of retina that have died (infarcts), which isn't reversible.
    However, they aren't disabling and between the two eyes I still have a full visual field - more than good enough to drive.
    Things still the same - nice and stable, 20/20 vision - 8 months since the post, and 4 years since it all started!
    Let me know if I can help with anything else.
     
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  14. PDR T2

    PDR T2 · Member

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    Hello. Thank you so much for your reply. Hope you are doing well. I’m still going through it all. 4x laser in each eye and Avastin shot in each every 6 weeks. No more laser for now at least. Honestly, I feel like my vision is getting worse. Right when has a big cloudy / blind spot in the middle. I don’t have dme so not sure if it is bleeding or not. Honestly. This whole thing is tiring not going to lie. But going through it.
    Did you vision get bad at any point ( during treatment)and improved eventually? Any central vision cloudiness / grey spots that you’ve seen and went away? again thanks for your response and happy holidays.
     
  15. Helen40

    Helen40 · Active Member

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    Hey, hope you don't mind me jumping in, how are you today? I'm going through this too, I'm scared and find it hard to stay upbeat or enjoy much going on around me, it's not something you can put to the back if your mind when it's literally there every time you open your eyes! I will say the responses I received were so uplifting and I re read them to keep me going, it takes a long long time to heal or improve apparently, the treatments are pretty wonderful really and I remain hopeful that my turn to improve will come too. Sending you hugs and lots of luck that you also improve as gave so many people on here, we'll get through this!
     
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  16. Helen40

    Helen40 · Active Member

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    Thankyou from the bottom of my heart for this, very bad day for me today and this has helped me so much I even read it aloud to my family, stay well x
     
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