An update

[gwai84]

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 -

 

[Sosgez]

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

 

[Antje77]

What a wonderful update, @gwai84 !

 

[gwai84]

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

A1Cs 6-7%

 

[gwai84]

A1Cs 6-7%

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

 

[Sosgez]

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.

 

[gwai84]

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.

 

[DCUKMod]

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.

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.

 

[Geordie_P]

Great update- very encouraging!

 

[PDR T2]

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 -

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,

 

[Geordie_P]

Helllo @Geordie_P - 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,

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!

 

[PDR T2]

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!

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

 

[gwai84]

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,

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.

 

[PDR T2]

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.

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.

 

[Helen40]

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.

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!

 

[Helen40]

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 -

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

 

[suk]

Hi, just thought I’d share my story of what happened when I got a bleed in my left eye back in August 2020.
So I had a fall when I lost my bearings in the middle of the night and fell back on my head. 2 days later I started to experience blurred vision. Called the GP who referred me to the optician who in turn told me to go to A&E as I may have a detached retina.
A&E consultant confirmed it wasn’t detached but a heavy bleed and I needed laser treatment.
And so it began, long waiting time’s appointment cancellations etc. by the time I got an appointment for a vitrectomy in February 2021 6 months after my fall the bleed had caused my retina to detach.
Then followed 6 surgeries to try to put the situation right.
I have had silicone oil, cataract removal, 2 yag capsulotomies and 2 cyclodiodes.
The outcome is that I now have very little sight in my left eye and secondary glaucoma so the pressure has to be regularly checked.
During all the treatment I was having I asked for a second opinion only to be told that everything that needed to be done had been done, I was just a bad diabetic. I was furious as never in my 50 years of type 1 was I ever told that I had bad control. In fact my diabetic consultant always told me I was an exemplary patient.
Now I’m being classed as a Covid casualty. In other words if there hadn’t been a delay in my original operation my sight would’ve been saved.
It is what it is as they say!

 

[Ronancastled]

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.

I'll copy @Dark Horse in on this as I believe their is some data on a lag between BG control & retinopathy improving.
May go some way to explaining your situation.

 

[suk]

Are you saying there may be some hope of my sight improving?
I’ve been told it will never improve due to the retinal detachment.

 

[NicoleC1971]

Are you saying there may be some hope of my sight improving?
I’ve been told it will never improve due to the retinal detachment.

Sorry you have had it so rough having had these problems during a chaotic time for the NHS.
I've lived with sight loss following my double vitrectomy though the sight loss (partially sighted) beats going full on blind. My operation was done promptly so I feel lucky now but it did change my life since I cannot drive anymore.
So its just to say you can and will adapt to the situation which wasn't of your making but do keep making the point re the covid shambles because we should never have closed our health service down in this way.
As I understand it, the damage to the retinal vessels occurs during fluctuations i.e. rollercoaster blood sugars. Not saying that was you, just that I don't think the average consultant without looking at cgm data , can always spot what's going on! And most don't have time to check anything other than heart, kidneys, hba1c perhaps?
My eye surgeon was my saviour not any of the daibetologists I've seen but that is expecting too much of them given the limited time and unlimited complexities of diabetics!