retinopathy

[rachy102]

Hi i am new to this sight but have been diagnosed type 2 since 2006.I have recently been treated for various eye problems which have come on suddenly and very scared.I had laser treatment on right eye due tto a blind spot caused by diabetes which has now got worse and have no direct vision and last week had a large bleed on my left eye which was treated with laser emediatly but not gaueranteed tney can save my sight,tnhey say i have a swelling behind right eye and agressive diabetic retinopathy in left eye.my questions are,can this be reversed and has anyone been throyugh thjis.second question how do i carry on with my job.i rely on my car and cannot afford not to work,i wont be classed as partially sighted unless eyesight gets worse but have to take an independant eyetest to see if can legally drive.Any advice or anyone tnhat has experienced this would be gratefully recieved.Thankyou.x
P.s excuse spelling i am struggling to read!!!

 

[grovesy]

Welcome.

 

[Northerner]

Hi i am new to this sight but have been diagnosed type 2 since 2006.I have recently been treated for various eye problems which have come on suddenly and very scared.I had laser treatment on right eye due tto a blind spot caused by diabetes which has now got worse and have no direct vision and last week had a large bleed on my left eye which was treated with laser emediatly but not gaueranteed tney can save my sight,tnhey say i have a swelling behind right eye and agressive diabetic retinopathy in left eye.my questions are,can this be reversed and has anyone been throyugh thjis.second question how do i carry on with my job.i rely on my car and cannot afford not to work,i wont be classed as partially sighted unless eyesight gets worse but have to take an independant eyetest to see if can legally drive.Any advice or anyone tnhat has experienced this would be gratefully recieved.Thankyou.x
P.s excuse spelling i am struggling to read!!!

Hi rachy, welcome to the forum 🙂 I'm very sorry to hear about the problems you are experiencing I've only had a tiny amount of laser, so can't really offer any advice, but we do have members here who have encountered serious problems like you describe - hopefully they will be along to offer some reassurance.

The main things you can do to help yourself are to keep your blood glucose control as good as possible, and also your blood pressure, as these are the key elements that will affect your ability to keep the retinopathy as stable as possible. What medication are you on, and what have your levels been like generally over the years?

 

[Ditto]

Hello rachy and welcome to the forum 🙂

I'm sorry to hear about your problems.

 

[rachy102]

thhankyou for your reply,My blood sugars have been out of control for many years,due to myself and also no medication review since put on novomix over 8 years ago!!i have now moved county and they are more switched on.they cant believe ive never had a review or hospital appointment or ever been referred to a diatician!!since my last visit to gp that i arranged myself after having urgent laser thhey double my metformin and my blood sugars have already halfed.!again i have never in 11 years ever had any good advice as to what my blood sugars should be throughout the day.They are still between 7-12 fasting in morning,go down to a good 7-9 lunchtime and about 8-10 before bed.i dont know if this is good or bad but before medication adjustment they were in 20's in morning! cant believe all these years ive had these readings and caused probable blindness when it could have been resolved,its literally took a week to get them down with the right dose!

 

[rachy102]

sorry ditto i cant read your reply the print is too small!!

 

[Northerner]

thhankyou for your reply,My blood sugars have been out of control for many years,due to myself and also no medication review since put on novomix over 8 years ago!!i have now moved county and they are more switched on.they cant believe ive never had a review or hospital appointment or ever been referred to a diatician!!since my last visit to gp that i arranged myself after having urgent laser thhey double my metformin and my blood sugars have already halfed.!again i have never in 11 years ever had any good advice as to what my blood sugars should be throughout the day.They are still between 7-12 fasting in morning,go down to a good 7-9 lunchtime and about 8-10 before bed.i dont know if this is good or bad but before medication adjustment they were in 20's in morning! cant believe all these years ive had these readings and caused probable blindness when it could have been resolved,its literally took a week to get them down with the right dose!

Very sorry to hear you have had such poor care in the past Rachy The quality of care can vary so much depending on where you live, and that really shouldn't be the case. Certainly, there's no excuse for no reviews or action to help you manage things better - thank goodness you now have a more proactive team working on your behalf. Your numbers are a little elevated, but it's better that they don't come crashing right down too quickly. You might want to ask your team about the possibility of changing to a basal/bolus insulin regime, as this can be much more flexible than mixed insulin (it's a regime that uses separate slow and fast acting insulins), and also help you achieve better control. Ideally, you want to be between 5-7 fasting and before meals, and no more than 8.5 2 hours after eating, but try not to worry if you are finding this hard to achieve at first.

Did they say whether there was a possible treatment for the swelling in your right eye? I have a leakage of fluid behind the eye, but it's not too bad and has remained stable for 2-3 years now - it's only if it gets to a certain level that they will treat it with injections - I know that sounds horrible, but a lot of people have the injections and say it's nothing to worry about, so worth having done if it helps you retain your sight 🙂

 

[Ditto]

Hello rachy and welcome to the forum 🙂 I'm sorry to hear about your problems.

I can't believe they left you like that. I thought I was bad enough. Barstools. Grrr.

 

[Flower]

Hello and welcome @rachy102 🙂

I'm so sorry you are going through such a frightening time with your sight and have been left to get on with things for so long without any help and support.

The eye surgeons will be using different methods to try and stabilise your vision. Once you've reached the proliferative retinopathy stage it can't be reversed but it can be stabilised. There is some effective treatment available to stop it progressing any further, laser is the main method to try and seal off the damaged vessels and prevent further bleeds. The blood that's trapped in your eye after the retinal bleed will eventually disperse but it takes time as it is trapped in the eyeball jelly. If further bleeds happen there is an operation called a vitrectomy where the jelly is removed from inside the eye and is replaced with a saline solution. The liquid lets any further bleeds disperse a lot quicker so you can get light to the back of the retina and recover some sight.

Macular oedema is swelling from a build up of fluid from the damaged, leaky vessels in your retina. It affects the central field of vision. Laser is used to try and seal off the leaking blood vessels and there are some effective injections as Northerner says which reduce the fluid build up and can help stabilise central vision with good results. They sound a lot worse in the mind than they are in reality.

Please ask for a referral to a hospital diabetes clinic as getting tight control of your blood sugar, cholesterol and blood pressure is vital. They will advise you to gradually decrease your glucose levels as perversely rapidly tightening your control can cause retinopathy to progress more quickly - which is the last thing you need.

Follow the advice of your eye clinic about driving, if you have been told by them not to drive then follow that advice. You either meet the legal sight requirements or you don't. You can reapply for your licence if it is removed once your eyes have stabilised but the fallout from not having a licence isn't part of the consideration. I know how exceedingly worrying it all is with your job, car etc resting on the outcome. I had to resign myself to being happy with having some sight at the end of the day and sorted the rest of the mess out as I went along. There is financial help available from the benefit system if you have to be signed off for a period of time but I hope it doesn't come to that.

I really hope things go well for you and that all your present issues can be stabilised and resolved. Please let us know how things go. Wishing you well.

 

[Copepod]

Hi i am new to this sight but have been diagnosed type 2 since 2006.I have recently been treated for various eye problems which have come on suddenly and very scared.I had laser treatment on right eye due tto a blind spot caused by diabetes which has now got worse and have no direct vision and last week had a large bleed on my left eye which was treated with laser emediatly but not gaueranteed tney can save my sight,tnhey say i have a swelling behind right eye and agressive diabetic retinopathy in left eye.my questions are,can this be reversed and has anyone been throyugh thjis.second question how do i carry on with my job.i rely on my car and cannot afford not to work,i wont be classed as partially sighted unless eyesight gets worse but have to take an independant eyetest to see if can legally drive.Any advice or anyone tnhat has experienced this would be gratefully recieved.Thankyou.x
P.s excuse spelling i am struggling to read!!!

Welcome to the forum Rachy102. Others have covered the retinopathy and treatment issues. Regarding print size, most web browsers allow you to increase font size to 120% or more, which might help you.

 

[Maz2]

Hello Rachy and welcome to the Forum. Words fail me about how you were left with no follow ups and advice. I am pre-diabetic and on a prevention programme at present so hba1c checked about 4 times in that period. However, a friend of mine is also pre-diabetic and has been referred to a prevention programme in the same region but a different area and is only being checked once in 12 months, which is within the guidelines for pre-diabetics to be fair. An ex work colleague is also pre-diabetic and has not been offered anything.

It is disgraceful that it all seems to depend on where you live. My neighbour and another friend of mine are long-term diabetics (20 years and 10 years respectively) and they are seen and checked on a regular basis which is the way it should be.