Retinopathy - can it be stopped in its tracks

[the_anticarb]

I know I have posted a lot about retinopathy lately, and I am having a vitrectomy soon which I hope will resolve my problems for now - BUT - I am really scared that no matter what I do it will come back, either in the left eye or in the right eye which is currently stable.

I just feel that this illness is vicious and unpredictable.

Just six months ago my left eye was my good eye with only moderate non prolific retinopathy - then it went haywire, new vessels all over the place, four sessions of laser and all for nowt (although it may well be in a worse state had I not had any laser). Now my right eye, which had had some laser previously, is the good eye.

The right eye is being good for now, but has had 3 sessions of laser, and who's to say it won't follow lefty on a path of destruction in the months or years to come?

I know no one can give me any guarantees, but I am scared that nothing I or the doctors can do will really stop the retinopathy from getting a hold again, even if the vitrectomy is an initial success, and it will only be a matter of time til I'm back where I started.

I know I have to keep my bg's good (my bp has always been ok and i'm on a statin for cholesterol), but what if that isn't enough?

Anyone have success stories of stabilisation after advanced PDR?

 

[mrburden]

Hi,
I've had 3 vtrectomies (2 in left, 1 in right). The left eye has not gone well since the ops, first a detached retina and then a cataract and glaucoma, leaving me blind in that eye. However, the right eye is stable and has been for about 5 years really, though I do use 3 types of eyedrops to control the pressure in both eyes. I would say that my right eye does not have great sight but it is adequate. I have lost my driving licence because the retinopathy has reduced my sight and field of vision to a level that is below that required to drive, but I can manage most daily tasks with the vision I still have. As I have mentioned before on this site, the alternative to having the vitrectomy is pretty much guaranteed blindness, so we don't have much of an option really.
As far as I'm concerned, the right side vitrectomy has saved and stabilized my sight. The eye consultants all seem to be happy that it is dormant and, as long as I play my part in keeping my diabetes and blood sugars controlled they foresee no further problems.

 

[SouthernGeneral6512]

I wonder what part the bringing down of BS plays in making it worse my GP keeps trying to up my dose of metformin (not realising?) that this could exacerbate the problems with my eyes :sick:. I remember reading in a paper that one third of people who have had poorly controlled BS make their retinopothy worse when they finally bring it under control and that is a big worry.

So far as the future goes there are so many new treatments waiting there I suppose it's quite a good time to have these problems (if there is a good time) because if it had been 5 or 10 years ago there would have been much less hope

 

[mrburden]

I wonder what part the bringing down of BS plays in making it worse my GP keeps trying to up my dose of metformin (not realising?) that this could exacerbate the problems with my eyes :sick:. I remember reading in a paper that one third of people who have had poorly controlled BS make their retinopothy worse when they finally bring it under control and that is a big worry.

So far as the future goes there are so many new treatments waiting there I suppose it's quite a good time to have these problems (if there is a good time) because if it had been 5 or 10 years ago there would have been much less hope

I think you may be mis-understanding the statistics regarding BS control and retinopathy. There is a difference between a drastic drop in BS levels and "bringing it under control". The latter is far more important and can be done under controlled conditions, a bit at a time. The effect on the eyesight caused by lowering the blood sugar are usually temporary. The long term effects of "out of control" BS levels will, in general, have a far more detrimental effect on your eyesight and other organs than getting good control will. Your GP is probably acting on the blood test results he gets from you and, if those show that your levels are above the recommended targets, he would be right to slowly increase the Metformin to bring the BS level down over time.

 

[SouthernGeneral6512]

I suppose it depends what it was before and I've recently moved to this practice so I'm not sure she knows how much it's dropped.

I was also quite concerned last week when she didn't seem to know that there can be a rebound from dropping the BS too quickly :sick:.

I'm interested in you saying that the effects are temporary does this mean that any new vessels that appear on the retina will in time start to diminish?

 

[the_anticarb]

I know that bringing down my hba1c very fast when I found out I was pregnant was what kicked my retinopathy off - I had background before then, but nothing too serious and certainly nothing proliferative. It was a bit of a recipe for disaster really, as I brought my levels down very low practically overnight, my hba1c dropped from 9.6 to 5.9 within weeks. Then add all the lovely pregnancy hormones and growth factors and it's not a good mix. For some reason the aggressive proliferation didn't happen during the pregnancy, although it did begin a little towards the end and then after 2 sessions of laser in rt eye stabilised. But for some reason my left eye waited a full year before deciding to proliferate. My consultant said it was a legacy.

At the time, being pregnant and unplanned, my priority was for the baby and I knew if I did not have excellent control asap there was a high risk of miscarriage, malformation or still birth.

Luckily, I had a healthy baby boy. yes, I have ruined my eyes in the process but he's worth it, I'd rather be blind than not have him here.

This early worsening, when people with some background retinopathy can induce proliferation by getting their levels down too quick is the thing I hate the most about this awful disease. Can you imagine a smoker who gives up smoking only to find that it brings on lung cancer? An alcoholic who when they finally stop drinking finds it accelerates cirrhosis of the liver?

 

[SouthernGeneral6512]

I couldn't believe my doctor wanted to up my metformin from 2 to 3 I was thinking of backing off to 1 ... needless to say it's not the doctors eyes they can go home at the end of the day and leave the problems behind we patients can't

 

[the_anticarb]

I couldn't believe my doctor wanted to up my metformin from 2 to 3 I was thinking of backing off to 1 ... needless to say it's not the doctors eyes they can gop home at the end of the day and leave the problems behind we patients can't

Will that really make a big difference to your levels? I'm on four metformin a day, to be honest they don't really make that much difference to my levels, but I am on a lot of insulin anyway as my body's ability to deal with carbs on its own is practically zilch

 

[SouthernGeneral6512]

I've changed by diet too and perhaps that has the bigger influence? No sugar and a little linseed bread.

My blood sugar this morning was 5.7 and it's usually in the 6s which is miles lower than it used to be although because of what I've read I'm just not sure if that is a good thing? I sometimes wonder if it's the daily swings that causes the problem with the eyes and if that can be reduced then the situation may improve? So many questions :sick:

 

[xyzzy]

The guy who did my recent first ever retinopathy test (which came back with an all clear thankfully) said many newly diagnosed may show a bit of damage in their first year but so long as they get and maintain good control it can repair itself over time.

 

[SouthernGeneral6512]

Is that newly diagnosed with prolific retinopathy? There is so much damage with that it's hard to believe it can be repaired

 

[noblehead]

I know I have to keep my bg's good (my bp has always been ok and i'm on a statin for cholesterol), but what if that isn't enough?

Those are the big 3 and after that it's down to having regular check-ups and hoping for the best that it doesn't return, diet does play a part as my own Opthamologist has said and getting a good daily intake of fruit & vegetables can benefit eye health.

 

[xyzzy]

Is that newly diagnosed with prolific retinopathy? There is so much damage with that it's hard to believe it can be repaired

I really don't know being pretty newly diagnosed myself I don't know a lot about retinopathy. The guy only spoke in broad terms such as "some minor damage" etc. He said it in the context of what to expect when they sent my results through.

 

[mrburden]

I suppose it depends what it was before and I've recently moved to this practice so I'm not sure she knows how much it's dropped.

I was also quite concerned last week when she didn't seem to know that there can be a rebound from dropping the BS too quickly :sick:.

I'm interested in you saying that the effects are temporary does this mean that any new vessels that appear on the retina will in time start to diminish?

In my experience, the problems caused to the vision by a sudden drop in BS levels are more to do with the focus of the lens caused by differing eye pressure rather that a sudden increase in the growth of blood vessels. In this case the pressure returns to "normal" within 24 hours, returning the sight to it's former state. I can't say that I have ever suffered anything other than this when my BS level changes rapidly. The effects of this can seem similar to the early stages of retinopathy and this makes me wonder if people get the two problems confused.
Of course, small bleeds can stop by themselves and the eye will irrigate itself, leaving the vision as it was before the bleed. So to some extent, yes retinopathy can "get better" if the BS and blood pressure are kept under control and further bleeds are avoided.

 

[SouthernGeneral6512]

I think it depends which paper you read ... TBH for me it was slightly different I had no blood vessels in February had a heart attack at the end of April and started 10 tablets per day then blood vessels had appeared by the end of May ... seems like a bit of a coincidence to me :sick:

 

[the_anticarb]

I think it depends which paper you read ... TBH for me it was slightly different I had no blood vessels in February had a heart attack at the end of April and started 10 tablets per day then blood vessels had appeared by the end of May ... seems like a bit of a coincidence to me :sick:

Its amazing how fast they can come on, isn't it. I had no blood vessels in December, just before xmas, then by March I was told I was high risk with loads of the little blighters. The only significant event I can think of during that time was that I got a very nasty virus - I read a paper on the net that suggested this could induce proliferation due to the virus making the body release growth factors. It's not widely accepted, so I'll never know for sure, but certainly something happened to make the blood vessels grow fast.

 

[hanadr]

Remember folks Blood Pressure has an impact on retinopathy too. It needs to be under control.
Hana

 

[SouthernGeneral6512]

I think it depends which paper you read ... TBH for me it was slightly different I had no blood vessels in February had a heart attack at the end of April and started 10 tablets per day then blood vessels had appeared by the end of May ... seems like a bit of a coincidence to me :sick:

Its amazing how fast they can come on, isn't it. I had no blood vessels in December, just before xmas, then by March I was told I was high risk with loads of the little blighters. The only significant event I can think of during that time was that I got a very nasty virus - I read a paper on the net that suggested this could induce proliferation due to the virus making the body release growth factors. It's not widely accepted, so I'll never know for sure, but certainly something happened to make the blood vessels grow fast.

I think that's true if you are on the edge it probably doesn't take much to push you over :sick:.

Have you had 3 rounds of laser since March?

 

[the_anticarb]

I think it depends which paper you read ... TBH for me it was slightly different I had no blood vessels in February had a heart attack at the end of April and started 10 tablets per day then blood vessels had appeared by the end of May ... seems like a bit of a coincidence to me :sick:

Its amazing how fast they can come on, isn't it. I had no blood vessels in December, just before xmas, then by March I was told I was high risk with loads of the little blighters. The only significant event I can think of during that time was that I got a very nasty virus - I read a paper on the net that suggested this could induce proliferation due to the virus making the body release growth factors. It's not widely accepted, so I'll never know for sure, but certainly something happened to make the blood vessels grow fast.

I think that's true if you are on the edge it probably doesn't take much to push you over :sick:.

Have you had 3 rounds of laser since March?

I've had more - four in the left eye and one in the right. Left eye misbehaving so will get more laser during the vitrectomy. When will it end? I'm so worried I will go blind because nothing will work

 

[SouthernGeneral6512]

I think a positive attitude can help improve our health in all sorts of ways although I know how difficult it can be not to slide into thinking the worst