Laser treatment for Retinopathy

[35yearsofType1]

Hi Everyone,

I’m hoping to find some people who have some success stories regarding laser treatment for retinopathy. I am a 36 year old who was diagnosed with type 1 as a 1 year old in 1983. I’ve have always had reasonable or good control (usually hba1c 54 or less). Approximately 18months after having both my children I’ve have developed some form of retinopathy (in 2017 some IRMAs, 2020 some IRMAs). I’ve have been under consultant lead care every now and again then get bumped out and back onto the diabetic screening. In Jan 2020 I was referred back to the clinic as I have a ‘new’ blood vessel in my left eye. I was sent for a Flourescin Angiogram to identify if it was leaking or not. I was told if it was leaking I would be referred for treatment. Then COVID-19 has occurred and I did not have a follow up appointment until yesterday (called multiple times but was told my results had been reviewed and did not need immediate treatment).

I met with a different ophthalmologist yesterday whose approach is different to my previous consultant. She has referred me to have the Laser treatment on the vessel in my left eye (we have established this vessel developed in 2017 hasn’t leaked at all) and that there was a small amount of very small vessels in my right eye that she would use a ‘soft laser’ just to prevent them from leaking. Apparently both of these should not affect my sight due to the position of the new blood vessels and I will still be allowed to drive .

I am rather devastated though I’m only 36 years old and have generally looked after myself - yes there have been short periods where my control wasn’t good (a year as a teenager, a year in my 20s etc) but generally I do try (eat well, not overweight etc).

Over the past 6 months I now have a freestyle libre and have purchased a MiaoMiao which I think is fab - so tightening up my control could not be easier. I just fear this is the beginning of the end. Is it going to be a downward spiral from here to me losing my sight (which at the moment is great!) or is there a possibility that I could have another 30 years without too many issues?

Thank you to anyone who has read my long story - I’m just looking for positivity so that I feel I can tackle this head on and come out the other side!

 

[Hopeful34]

Welcome to the forum.
Really sorry you've got to have laser therapy. I've had type 1 diabetes for 53 years, and like you was devastated when I needed to have laser therapy. I'm sorry, I can't remember exactly when the first round was, but basically had 2 lots of laser treatment in both eyes, which worked well. A few years later, had to have some more, but again it worked well, and my eyes have been stable since then.
Like you I got the Libre and Miaomiao which helped a lot, even though my control wasn't bad previously.
It's a really scary thing to be told you need laser treatment, but there's definitely hope that it will work well. You may or may not need more laser in the future, but you're keeping good control of your diabetes, which is the best thing to do.
Hope it all goes well. Let us know how you're doing.

 

[MrsA2]

Hi
I've had laser treatment but for a genetic defect, sometimes things just happen. Doesn't mean yours is because of diabetes, it could have happened anyway. Because of the diabetes and the checks it has been found nice and early which is positive.
Also, it doesn't hurt and has good results.
Please don't beat yourself up about it. As you say your control is good and that's what matters in the long term

 

[35yearsofType1]

Thank you very much both of you. You have really given me the reassurance I needed. I felt like for the ophthalmologist it was a bog standard thing as she just said oh I can’t do it now as I have an appointment at 12! For me it was such a big thing.

Thank you

 

[MarkMunday]

... Thank you to anyone who has read my long story - I’m just looking for positivity so that I feel I can tackle this head on and come out the other side!

That this is happening in spite of good control must be very disappointing. Perhaps the age of T1 onset was an aggravating factor. Achieving stable control during childhood and puberty is really difficult, and it seems complication promoting epigenetic changes take place at this early stage. In which case, subsequent good control has a limited effect. Complications are what they are, and we just have to do what it takes to deal with them. Sounds like you are getting the support you need and best wishes.

 

[35yearsofType1]

Thank you - I hope in a couple of years I can come back with a positive! I’m just focussing on making my control better - just bought a smart watch so the MiaoMiao can transmit my blood sugars to that so I can see them on my wrist. The new technology does make such a difference.

 

[Hopeful34]

To the Opthalmologists you're right, it is a bog standard thing, but when you're the one that's just been told you need it, it is huge. I'd been referred to the hospital from retinal screening one year, and they said, they're just been over cautious, you don't need any treatment. However if we discharge you, you'll be referred back after your next scan, so come back to the hospital in a year, and we'll discharge you. Was so relieved at that, so no worries at my next appointment, expecting to be discharged.
Was so shocked when I was told I'd need laser therapy. Looked for every way to sort it out without later treatment, spoke to people who had had it, also Consultant Endocrinologist and Diabetes Nurse, both of whom I trust, and finally accepted that I should have it done.
The only other things I was told was that, as Mark said, the longer you've had type 1, the greater your risk becomes of needing laser treatment, and also that while good control is so important, for some people it is just simply down to their genes. People can have good control, and still end up having to have laser treatment, but obviously that's not a reason to give up trying to have as good control as you can.
Please ask any more questions you may have. I was certainly reassured after talking to someone who had had it.

 

[35yearsofType1]

Thank you. I’m the same I was referred then one ophthalmologist kept me under the hospital care then another then discharged me so when I went back I wasn’t expecting the news she gave me. I haven’t had my appointment through yet for the treatment - will I have to stop driving for a few weeks or so I just need to leave it for a few days. I need to drive to get to my place of work.

 

[Hopeful34]

I was able to drive the next day with no problem, basically as soon as the drops they used to dilate my pupils wore off. When I had the treatment early in the morning, I drove that evening, but everyone is different. It largely depends how much of the dilating drops they put in, and how quickly they wear off. It's worth taking sunglasses with you to the appointment, as your eyes can find the sun too bright.

 

[NicoleC1971]

Thank you very much both of you. You have really given me the reassurance I needed. I felt like for the ophthalmologist it was a bog standard thing as she just said oh I can’t do it now as I have an appointment at 12! For me it was such a big thing.

Thank you

Hi. I also developed retinopathy both eyes post pregnancy. It was uncomfortable but the most irritating thing was the eye drops which you've already experienced in any case! Good luck and recall that the reason our eyes get checked so infrequently is that this thing does progress slowly. Either way don't take it as a judgement on your efforts to control blood sugars particularly as a young mum and having gone through the massive swings we can get during pregnancies.

 

[johnpol]

I've been treated for Proliferative Retinopathy in both eyes and have received lots of laser treatment (around 9 lots) and this has controlled the size and spread of the new vessels. I have only had a couple of micro bleeds and am now stable. the problem can get worse before it gets better and going from poor control to tight control can make it worse for a while, and then it can settle down as the tighter control helps in the long run. My retinopathy is now stable and requires no laser at the moment, I do have a new vessel that has appeared in my field of vision but its stable and doesn't need treatment, yet, the laser left me with no ill affects to my vision and was in a whole not a painful experience, but if I'm honest I didn't cope with the aftermath (red vision for a few hours and a headache but that was more due to stress than the treatment) and rapidly realised I don't like my eyes faffed with , strange feelings after 3 eye surgeries! But all in all I have had a positive experience with my laser treatment. Hope everything goes well for you.

 

[35yearsofType1]

Hi. I also developed retinopathy both eyes post pregnancy. It was uncomfortable but the most irritating thing was the eye drops which you've already experienced in any case! Good luck and recall that the reason our eyes get checked so infrequently is that this thing does progress slowly. Either way don't take it as a judgement on your efforts to control blood sugars particularly as a young mum and having gone through the massive swings we can get during pregnancies.

Thank you - I am just keeping my fingers crossed that this is a pregnancy caused blip - to be honest when I went to the first appointment before conceiving the doctor said due to the length of time I’ve had diabetes I would probably loose some of my sight so I sort of felt chuffed I’ve got through the other side. I’m feeling much more positive! I’ll keep you all posted!

 

[35yearsofType1]

I've been treated for Proliferative Retinopathy in both eyes and have received lots of laser treatment (around 9 lots) and this has controlled the size and spread of the new vessels. I have only had a couple of micro bleeds and am now stable. the problem can get worse before it gets better and going from poor control to tight control can make it worse for a while, and then it can settle down as the tighter control helps in the long run. My retinopathy is now stable and requires no laser at the moment, I do have a new vessel that has appeared in my field of vision but its stable and doesn't need treatment, yet, the laser left me with no ill affects to my vision and was in a whole not a painful experience, but if I'm honest I didn't cope with the aftermath (red vision for a few hours and a headache but that was more due to stress than the treatment) and rapidly realised I don't like my eyes faffed with , strange feelings after 3 eye surgeries! But all in all I have had a positive experience with my laser treatment. Hope everything goes well for you.

Thank you this has made me feel better that your eyesight is stable. It’s the first time I suppose that having diabetes has actually dawned on me that these things might happen to me. I’m starting to have a more positive frame of mind - the ‘new’ vessel in my left eye has been there for three years so this isn’t an actual change and there are some IRMAs in my right so really over nearly a year my eyes have been stable and I’m keeping that in my mind! Thank you everyone for your support it has been what I have needed!

 

[35yearsofType1]

Hi Everyone,

I just thought I would give an update - had my first lot of laser treatment this week. Saw a different opthalmologist who decided not to do both eyes at once and to go back in a month for my other eye. He was very helpful and explained more this time (I’d asked the nurse who put the drops in if I could have a chat with him before the procedure) . He explained how both changes had occurred during/post pregnancy so this is probably what caused the change. He made me feel confident in what was about to happen and that I could help reduce the risk of further complications. I’m have a 24 hour bp monitor in a couple of weeks - which is another thing I worry about so I feel I’m on the right track and hope that in 6 month / a year etc etc I can post some good news! Thank you everyone.

PS the procedure was not as bad as I thought it would be and the whole thing from arriving at the hospital to leaving took 30 mins! Also hasn’t affected my sight!

 

[Hopeful34]

Thanks for the update. Glad it wasn't as bad as you thought it would be, and that your sight hasn't been affected, that is good news. Let us know how you get on with your other eye, hope it all goes well.

 

[35yearsofType1]

Hi Everyone,

I'm back! I had a small amount of laser in both eyes (Aug and then Nov second one being later due to appointments being cancelled). I went back last week for a check up on the laser and saw a different consultant who I am not sure if he had read my history or not, but basically looked at my eyes and then said he didn't know why the laser that was done was done as it would not do anything and that I needed full pan-retinal laser in both eyes. I was obviously quite shocked expecting to come back and everything be stable and now I have come back to square one! Anyway after me trying to talk to him at one point I said 'can you tell me if my eyes have change since I was last here?' and he said he did not know. So I left feeling devastated. Then an hour later he rang me and said he thought we could do the full pan-retinal laser in my left eye (which has always been my worse) and then just monitor my right eye every 3 months. I am waiting for an appointment through, but now my thoughts are just going over and over in my head and I feel I would just like an honest conversation. He asked me if I was opposed to treatment and I said no. I think I just needed someone to talk in more detail regarding the status of my eyes. I get the feeling that they haven't changed for over year so it isn't that there is anything new to treat but now I'm utterly fearful that I may be risking my vision because my right eye is now only being monitored!

Thank you anyone who reads this.

 

[Hopeful34]

Sorry you've had this happen. Do you go to an opticians that takes retinal photographs and therefore has a record of how your eyes were, and how they are now? If so, I would book an appointment with them for a second opinion, or you could ask to speak to someone else at the hospital before you have any treatment, to give you peace of mind.

 

[35yearsofType1]

I haven’t been for over a year - I was waiting for all of this to settle down but due to COVID it’s been going on for over a year now so I haven’t made an optician appointment. I had 4 days of worry and from reading everyone’s posts from summer I’m starting to feel more positive. I think I just need to have a proper conversation with what is actually going on with my eyes and if the best advice is to have the full laser in both then that’s what I need to do.

 

[Hopeful34]

I'd agree. The only reason I mentioned the optician, was because the one I go to has better scan machines than the hospital (or had until last year) and they discuss the results in detail and show me the pictures and compare them to previous ones. I see the same optician when I go for an eye test, but can book in for the scans separately if I need reassurance that nothing has changed, or if I've got any concerns. In fact, as I haven't been seen at hospital in over a year, I'm thinking of going for them fairly soon. I wouldn't go for an eye test if I was in your situation, but would go for scans and a second opinion, but I know I'm fortunate to go to a small independent optician who I trust. Hope you can get some peace of mind over it.

 

[Ushthetaff]

I’ve had diabetes 40 years and had laser treatment in my left eye over 20 years ago . My control was pants, however I used to wear glasses for distance , but now I don’t my control is a lot better these days , and every year I have the usual t done and every year I get the same letter little or no changes , no cause for concern , and let me say my control was a. Millennium away from where yours is so it doesn’t mean because you’ve had laser treatment you will lose your sight . Technology has made tighter control much easier , and let’s be fair that’s all we can do , and try and cram as much in to every day and I would say that even if I wasn’t diabetic ,
Do it and regret it never regret not doing it !!!!!!!