Still absolutely petrified after several laser sessions. Help.

[Dweller]

Hi,
This is my first post on here. My name is Anneka and I’m 28 years old. I’ve had type 1 diabetes for 21 years and back in August was diagnosed with background retinopathy in my left eye. I had scheduled laser a few weeks later for it and a week later my right eye suddenly filled with black dots, all leaking the very next day in which had me going to the emergency eye clinic straight away. The doctor didn’t really explain how the hell it came on so suddenly but said my eyes now had severe proliferative retinopathy. As everyone does, I googled and absolutely terrified myself into believing I’m going to go blind and during which I had cognitive behaviour therapy (which never really worked). Five months later and several laser sessions later (4 left, 7 right), I’m just recovering from another vitreous haemorrhage in my right eye and feel the retinopathy is not relenting. Though I am puzzled as to why it isn’t showing any signs of stabilising. Surely my the back of my eyes are like pincushions for oxygen now to reach it. I’ve taken control of my blood sugars gradually since October and recently my blood pressure too. Though it’s hard when every little bit of movement I do can bring on a bleed. I just need some hope please. I really don’t want to lose my peripheral vision and despite asking the doctor about injections to stop the retinopathy he simply said no it won’t work, laser is the only way. I’m very worried it’s going to keep getting worse no matter how much I’ve changed my lifestyle and eating healthily (spinach, carrots, fish etc). And to top it off I’ve come down with the norovirus recently and the pressure in my eyes when throwing up has caused multiple bleeding again everywhere. Got a Monday appointment which will probably equal more laser. I’m very deep down in a rut right now and need to see some light. Can anybody tell me if it’s going to be alright? Is laser my only option like the top consultant said?
Many thanks
Anneka

 

[SueJB]

Hi,
This is my first post on here. My name is Anneka and I’m 28 years old. I’ve had type 1 diabetes for 21 years and back in August was diagnosed with background retinopathy in my left eye. I had scheduled laser a few weeks later for it and a week later my right eye suddenly filled with black dots, all leaking the very next day in which had me going to the emergency eye clinic straight away. The doctor didn’t really explain how the hell it came on so suddenly but said my eyes now had severe proliferative retinopathy. As everyone does, I googled and absolutely terrified myself into believing I’m going to go blind and during which I had cognitive behaviour therapy (which never really worked). Five months later and several laser sessions later (4 left, 7 right), I’m just recovering from another vitreous haemorrhage in my right eye and feel the retinopathy is not relenting. Though I am puzzled as to why it isn’t showing any signs of stabilising. Surely my the back of my eyes are like pincushions for oxygen now to reach it. I’ve taken control of my blood sugars gradually since October and recently my blood pressure too. Though it’s hard when every little bit of movement I do can bring on a bleed. I just need some hope please. I really don’t want to lose my peripheral vision and despite asking the doctor about injections to stop the retinopathy he simply said no it won’t work, laser is the only way. I’m very worried it’s going to keep getting worse no matter how much I’ve changed my lifestyle and eating healthily (spinach, carrots, fish etc). And to top it off I’ve come down with the norovirus recently and the pressure in my eyes when throwing up has caused multiple bleeding again everywhere. Got a Monday appointment which will probably equal more laser. I’m very deep down in a rut right now and need to see some light. Can anybody tell me if it’s going to be alright? Is laser my only option like the top consultant said?
Many thanks
Anneka

I can send you a huge hug. The medical professionals will work hard for you and make sure the outcome is positive. Be strong and think positive thoughts. Let us know how you get on

 

[porl69]

Hi Anneka and welcome to the forum. There is an injection BUT I do believe it is for the early stages of retinopathy (someone correct me if I am wrong). I am not the best person to give you and assurance on this as I lost the sight in my left eye for similar reasons. Total lack of control/respect for my diabetes. Had so much laser treatment over a year it worried me. I was 30 when i lost the sight. I have managed with my one eye for the past 20 odd years, its something you have to do. Sorry I cant give any positive news for you
Sending ((HUGS))

 

[Dweller]

Trouble is the right eye is my most strongest and can see 70% of all my vision out of it. Always had a lazy left eye.

 

[porl69]

How well do you look after your diabetes?

 

[Dweller]

Before October my HBA1C was 10 something but in the new year I got it down to 6.3. Just can’t stop crying now. Just keeps on getting worse.

 

[lefeilouss]

Hi,
This is my first post on here. My name is Anneka and I’m 28 years old. I’ve had type 1 diabetes for 21 years and back in August was diagnosed with background retinopathy in my left eye. I had scheduled laser a few weeks later for it and a week later my right eye suddenly filled with black dots, all leaking the very next day in which had me going to the emergency eye clinic straight away. The doctor didn’t really explain how the hell it came on so suddenly but said my eyes now had severe proliferative retinopathy. As everyone does, I googled and absolutely terrified myself into believing I’m going to go blind and during which I had cognitive behaviour therapy (which never really worked). Five months later and several laser sessions later (4 left, 7 right), I’m just recovering from another vitreous haemorrhage in my right eye and feel the retinopathy is not relenting. Though I am puzzled as to why it isn’t showing any signs of stabilising. Surely my the back of my eyes are like pincushions for oxygen now to reach it. I’ve taken control of my blood sugars gradually since October and recently my blood pressure too. Though it’s hard when every little bit of movement I do can bring on a bleed. I just need some hope please. I really don’t want to lose my peripheral vision and despite asking the doctor about injections to stop the retinopathy he simply said no it won’t work, laser is the only way. I’m very worried it’s going to keep getting worse no matter how much I’ve changed my lifestyle and eating healthily (spinach, carrots, fish etc). And to top it off I’ve come down with the norovirus recently and the pressure in my eyes when throwing up has caused multiple bleeding again everywhere. Got a Monday appointment which will probably equal more laser. I’m very deep down in a rut right now and need to see some light. Can anybody tell me if it’s going to be alright? Is laser my only option like the top consultant said?
Many thanks
Anneka

Hi

I totally understand how you feel as I am kinda in your shoes, all I can say is that to have faith in your doctor as they are medical professionals and have patience for the eye to recover

I had a Vitreous hemorrhage in December 1017 few months back as i saw big black blots in my vision.
When i check with the doctor he scheduled me on vitrectomy in January and laser after the same time, and the following 2 months later anothee vitrectomy with a cataract surgery.

I am still recovering now and finally I have some vision back after few months not knowing when I could see again or whether I would go blind.

But having to read some success rates of vitrectomy and laser in this forum do help us to have some relief.

Do continue your treatment and doctors advice and I wish you a speedy recovery

 

[Dweller]

They’re on about keeping an eye (scuse the pun) on the haemorrhage in my upper vision and have referred me on to a doctor who can perform wash outs of the retina, which I’m guessing is Vitrectomy but can’t help but feel 100% completely against it. Like you I’ve read too many horror stories where it has made vision worse than it was before. It doesn’t help either with me that I don’t fully trust my professionals looking after my eyes. Every time I’ve been into clinic or had laser it’s with a different consultant. I’ve had about 4 people lasering my eye where as I’d prefer just one meddling back there and knowing their own work. One said a couple of months back that my eye looked like it was improving and assured me it wouldn’t get any worse but 2 months on it well and truly has. Filled me with hope then my body had different ideas.

 

[Dweller]

Think I’m just going to aim to get blood pressure right down now as sugars are good but pressure still rises to 130-40 systolic which I don’t think is good.

 

[lefeilouss]

They’re on about keeping an eye (scuse the pun) on the haemorrhage in my upper vision and have referred me on to a doctor who can perform wash outs of the retina, which I’m guessing is Vitrectomy but can’t help but feel 100% completely against it. Like you I’ve read too many horror stories where it has made vision worse than it was before. It doesn’t help either with me that I don’t fully trust my professionals looking after my eyes. Every time I’ve been into clinic or had laser it’s with a different consultant. I’ve had about 4 people lasering my eye where as I’d prefer just one meddling back there and knowing their own work. One said a couple of months back that my eye looked like it was improving and assured me it wouldn’t get any worse but 2 months on it well and truly has. Filled me with hope then my body had different ideas.

I understand how you feel but I think if I hadnt got my vitrectomy and all nw i think if would have gotten worst by now.

Like they always say the earlier u detect and get it treated the better.

I remember seein a few members here who had various vitrectomy years back and lasers and they did mention if its not for the they could have now lost their eyesight in the long run

 

[Dweller]

But doesn’t Vitrectomy permanently affect your vision? Like poorer long distance and central vision more blurred? I’m scared to lose my Dvla license among all this as only just renewed it the month before all this diagnosis and happenings.

 

[lefeilouss]

But doesn’t Vitrectomy permanently affect your vision? Like poorer long distance and central vision more blurred? I’m scared to lose my Dvla license among all this as only just renewed it the month before all this diagnosis and happenings.

I am not too sure about that but so far my vision improved which i think it will take months to get back to how it was I believe but i had cataract done as well so I am not sure

Hopefully it will get better in time, I have not heard about the permanent bad affects though.

Maybe some members in this forum could share their experiences?

 

[johnpol]

I have proliferative retinopathy in my right eye, with only small bleeds (two new black floaters) I have had six lot's of laser with new vessels growing near the optical nerve, which is a worry, the unfortunate news is that it does take a while for it to settle down. I also have cataracts in both eyes, just had the left one fixed and now waiting for the right one to be done, but unfortunately I have to be lasered in that eye. My consultant did tell me that it does take time and when you do get better control it sometimes gets worse before it gets better. I hope it improves for you

 

[Dweller]

Yeah I knew it could get worse if good control was instant. For the first month I brought my levels right down till I read what it does then put my levels up to 10-20 range from November till now and now one consultant has told me just to get tight control now which I’m trying to do. Hope it isn’t too soon. All this laser is horrible but I guess you and I are in the same boat with that. Hope your eyes stabilise soon too x

 

[johnpol]

Yeah I knew it could get worse if good control was instant. For the first month I brought my levels right down till I read what it does then put my levels up to 10-20 range from November till now and now one consultant has told me just to get tight control now which I’m trying to do. Hope it isn’t too soon. All this laser is horrible but I guess you and I are in the same boat with that. Hope your eyes stabilise soon too x

The problem could be that you got tight control and then relaxed a bit after reading what could happen, I have just kept my control reasonably tight. I have no doubt that it will get better (I'm not thinking about blindness yet) I agree with you that laser is definitely not pleasant, as a result of it all I hate anything being done to my eyes I actually feel ill afterwards now. But we will have to get on with it.

 

[sarahm723]

Hi,
This is my first post on here. My name is Anneka and I’m 28 years old. I’ve had type 1 diabetes for 21 years and back in August was diagnosed with background retinopathy in my left eye. I had scheduled laser a few weeks later for it and a week later my right eye suddenly filled with black dots, all leaking the very next day in which had me going to the emergency eye clinic straight away. The doctor didn’t really explain how the hell it came on so suddenly but said my eyes now had severe proliferative retinopathy. As everyone does, I googled and absolutely terrified myself into believing I’m going to go blind and during which I had cognitive behaviour therapy (which never really worked). Five months later and several laser sessions later (4 left, 7 right), I’m just recovering from another vitreous haemorrhage in my right eye and feel the retinopathy is not relenting. Though I am puzzled as to why it isn’t showing any signs of stabilising. Surely my the back of my eyes are like pincushions for oxygen now to reach it. I’ve taken control of my blood sugars gradually since October and recently my blood pressure too. Though it’s hard when every little bit of movement I do can bring on a bleed. I just need some hope please. I really don’t want to lose my peripheral vision and despite asking the doctor about injections to stop the retinopathy he simply said no it won’t work, laser is the only way. I’m very worried it’s going to keep getting worse no matter how much I’ve changed my lifestyle and eating healthily (spinach, carrots, fish etc). And to top it off I’ve come down with the norovirus recently and the pressure in my eyes when throwing up has caused multiple bleeding again everywhere. Got a Monday appointment which will probably equal more laser. I’m very deep down in a rut right now and need to see some light. Can anybody tell me if it’s going to be alright? Is laser my only option like the top consultant said?
Many thanks
Anneka

I feel like I wrote this myself.. I’m 28.. getting laser since may 2017, 2 weeks after I had a bleed.. which hasn’t stopped dripping blood had more laser still contained.. so now 3 weeks ago I had a vitrectomy I’m still bleeding... well I started bleeding 3 days after the vitrectomy ..I’m scared every day and pray so much for the knightmare to end .... tight control is worse for the eyes... it’s hard to know what to think .... I not sure what to say only I know how you feel

 

[Dweller]

I keep feeling like the excessive amount of laser I’ve had in such a short time isn’t helping but feel I can’t question the professionals. They must know what they’re doing.. I hope. How did the procedure go? It sounds terrifying. X

 

[sarahm723]

I keep feeling like the excessive amount of laser I’ve had in such a short time isn’t helping but feel I can’t question the professionals. They must know what they’re doing.. I hope. How did the procedure go? It sounds terrifying. X

Your username sounds like my life I’m constantly dwelling on it ... can I ask if your in Ireland or uk ?... you can question professionals some are better and more advanced in the treatment I know this from a family friend who was poorly done by a consultant and his op failed .. he since went to the guy I go to and it was a success for him it absalutely masters and you have every right to get second opinions it’s your eyes your vision your future . I was fine after vitrectomy but third day blood dots were back ... I have intense deep pain and unless I keep topping up with pain killers I can not function with the pain I’m due back for second review in 4 weeks but I have blurred vision since the op . If blood doesn’t stop and laser is failing the next option is vitrectomy ... it’s a battle in the mind aswell which is very hard ...

 

[Dweller]

I’m east of England, UK. And yes every second of every day I’m dwelling on future outcome of my eyes. Such a scary thing to go through. I’m hoping they’ll look on Monday at the haemorrhage and decide it’s healing nicely. The laser stopped most of the bleeding and there’s only a slight blur to my central vision but there’s still a dark black bouncing blob hanging there that rugs in every direction I look. Definitely going to ask what’s the risk of it opening again as they weren’t clear last time. Just said the abnormal vessel shrinked and tugged on the vitreous jelly causing the haemorrhage, so they sealed it. But isn’t it just going to tug again if it’s still in the vitreous? :/

 

[NicoleC1971]

Hi. Just wanted to say that my vitrectomies were performed at Moorfields by Eric Ezra and was highly successful with none of the happenings reported above which I am really sorry to hear about. At the time my father asked my GP to find out if the surgeon has a good reputation so at least I went into it feeling that I was in the best possible hands. My extensive lasering hadn't worked and I believe that having had sloppy control I had then gotten pregnant with tight control and this triggered the rapid profliferation. Nobody really knew why it all kicked off but I had had diabetes for 23 years by then so similar to you and believed that complications couldn't happen to a relatively young woman.
It is terrifying and I am so sorry for all the anxiety you are going through right now and hope you have emotional support in the real world too and at least 1 medical professional you can ask questions of such as what is this hospital/surgeon's success rate with procedure x? Not sure if a washout is the same as a vitrectomy by the way!
I know you are still going through the laser stage and that is not pleasant in itself particularly if you don't know if it is going to work! I just wanted to say that although I do have a restriction in my vision I am working full time, easily use phones/pcs etc. and am a hell of a lot fitter for not being able to drive (the ONLY restriction and this is only because I had both eyes done).
Wishing you and Sarah all the best with your diabetic eyes! xxx