Retinopathy vision loss

[jevans82]

Hi all

I have proliferative retinopathy in both eyes. My left eye is pretty much blind and I'm finding it hard. I've been attending Moorfields since 2008 when it first became apparent. Was just wondering, had anyone had any success / treatment / read research etc? Has your sight ever improved? Just reaching out really. I have a private app booked as I wasn't happy with treatment and would love to have some of your thoughts. Ive been type 1 for 30 years. Hoping to start a family soon but retinopathy is providing a bit of an obstacle!

Thanks all x

 

[noblehead]

Hi @jevans82

I had a vitrectomy operation back in 2003 followed by a cataract op some months later and have been problem-free since then, my vision is still good although I have a couple of blind spots in one eye (peripheral) but it's not enough to effect my ability to drive as I still get issued with a 3 year driving licence.

When diagnosed I was told the best thing I could do was reduce my HbA1c (slowly) and keep my bp and cholesterol levels in check, my bp was normal (below 140/80) but both my Ophthalmologists and gp said they'd prefer it to be around 130/70 to take the pressure off my eyes so I started on a low-dose bp med.

Really hope your private app goes well, I'm surprised at you having to go private as I've heard so many good things about Moorfields, but nonetheless have a look at the following website as it contains some excellent information and advice on DR which you should find useful:


http://www.diabeticretinopathy.org.uk/Information_for_patients.html

Good luck.

 

[jevans82]

Thanksso much @noblehead much appreciated. I also have peripheral in both eyes (the left is pretty much out of action, like someone has smeared vaseline over the lens and turned up the exposure!) I too was sad to have to go private. I was transferred to Northwick Park Moorfields and they are just so busy they just don't have the time to talk me through things / treatment options. I'm running out of space in both eyes for more laser to be done so giving private a go just to see if there is anything else I can do. Ironically, I work in television and I'm only in my 30's, plus planning on babies soon so vision is crucial! My BP and my a1c is spot on. Just a case of having diabetes for 30 years and it's making it's mark.

Anyway thanks again and so glad to hear yours is behaving x

 

[BeccyB]

I have been having trouble with blurring from proliferative retinopathy but started a course of Anti-VEGF injections on Friday and my eyes have been clearer yesterday and today. I assume it's down to the treatment rather than a coincidence!
I know the treatment is expensive though so you probably wouldn't want to get it privately, I'd bagger Moorfields. Or is there another hospital you can be referred to? You're within your rights if you aren't happy

 

[himtoo]

I have had a few injections for a macular edema back in 2014 ( lucentis) and apparently there is a newer injectable called eylea that is showing some very positive results.

I also wear this www.noctura.com it is a sleep mask designed to help with retinopathy
it is not available on the NHS ( currently costs me £1000 per year )
the customer service at noctura are really helpful and knowledgeable.

 

[BeccyB]

a newer injectable called eylea that is showing some very positive results.

ooh I think that's what I had!

 

[kev1]

I've had laser treatment in both eyes and back in 2010 twice had a heavy bleed in my right eye that left me with no vision other than the swirling mass of blood and protein which did a passable impression of the Milky Way. My consultant in Swansea recommended waiting to see if the eye slowly washed it out and recovered on its own. Almost there and the second bleed came along. Again, if I could put up with it, a waiting game was recommended and thankfully I've had no further incidents. I too can read the 2nd from bottom line and a few letters on the very bottom usually. I still have some light grey bits floating around which are more noticeable in some lighting conditions than others and I've noticed I do need a bit more light for the right eye to see exactly the same as my left. Apart from the bleed there were no other complications eg risk of detached retina etc so my decision to wait and see was an easy one, though frustrating at times. My be is usually 120/130 over 70-75 and cholesterol is spot on. You may already have had the op by now. If so I hope it's gone well and your recovery is underway. Good luck.