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Retinopathy/ macular oedema

Iluvien is not suitable for many people. It is only used for chronic (long-standing) macular oedema that has not responded to other treatments and should only be used in eyes that have had a lens replacement as it can cause cataracts.
 
I've just came back from my second injection. Eylea has cleared the swelling and some of the leaky vessels in my right eye, hoping it does the same for the left. Still to have both eyes treated by laser but so far Eylea has done the job from just 1 injection! So far, so good!
 
That is great news to hear!
Want to tell you a little laser story.
Awhile back, my doctor told me the time had come for some laser, not a thrilling prospect. So an appointment was made to have it done in his rooms, I am Australian, and most people see Specialists privately in their rooms, rather that sit for hours and hours in huge waiting rooms, especially if you work and your time is important.
Anyway, one quick zap and I was done, couldn't possibly proceed. He was nice and all and referred me to the Eye Hospital.
Fronted up there, and was told by a patronizing registrar that I really needed the laser, and was going to have to stand up and go with it, they could do it under anesthetic, but it was a huge waste of time and resources, basically guilted me into saying OK .
Fast fwd to my first laser appointment with my sister along to hold my hand, a gentle dr gave me something to relax me a little and off we went. and I mean off we went.
Many sessions later finally had the original jerk there to do my laser, he said patronizingly, Oh hello how are you, recognizing me, perhaps we will just do a little so you tolerate it. Thank you Dr said I. In the end he ended up saying, well thats all the time we have today, I had not moved a muscle. You have my admiration tho, injections into the eye are nasty
 
I'm dreading laser! Although people are saying it's not as bad as t seems!
Has anyone experienced a little floater after their injection? I've had one for about 3/4 days off and on, I've contacted the hospital or are going to check it on Monday
 
Flove14 said:
I'm dreading laser! Although people are saying it's not as bad as t seems!
Has anyone experienced a little floater after their injection? I've had one for about 3/4 days off and on, I've contacted the hospital or are going to check it on Monday
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hi @Flove14
exact same here - after each injection i would get these black floaters that randomly sort of floated across my vision .
they stopped after about a week.
all the best
 
I get floaters after injections. Had both eyes done this week. Occasional small , bit like a small fly , flitting about. Also get large floaters a bit like black snooker balls clanging together. They lift when you look down and drop as you look up. This is quite normal for me,and they quickly break up. They are simply small air bubbles. Nothing to worry about. If you coped with the injection OK, the laser is a walk in the park. Good luck ☺
 
sssjay22 said:
Hi, I am a new member as I felt compelled to sign up when i read your post.
I am currently 25, but at 21 I was also diagnosed with both proliferative retinopathy and macular odema in both eyes. I too had major blips in my teenage years and had horrendous control (mainly intentionally due to diabulimia tendencies etc.).I undertook the DAFNE programme and my control improved dramatically, which is what sadly sped up my eye issues apparently...! I had a few symptoms, but could still see vaguely okay so was so shocked when I was diagnosed! My diagnosis was also pitifully slow, cancelled retinal photography appointments and very delayed general eye appointments definitely didn't help.
The doctors said I needed urgent laser and that it may not cure the problem... I was so upset and thought my life was over.
Luckily, the laser worked...I did have quite a lot but it worked. I suffered some vision problems for a few more months after the laser, but it went away completely in time. Every doctors who looks at my eyes now always tells me that it's one of the best lasers they have ever seen so i couldn't be more thankful!
In the last 4 years my eyes have been stable, and more recently (due to a sort of realisation that i'm only 25 and never want to go through eye problems again) I have made sure my control has been much better (now at 58, the lowest I have ever had!).

All i can say to you is please don't worry so much and let the treatment take effect, there is literally no reason why it won't work. The hardest part is making sure your diabetes is controlled for ever more, although we are all struggling with that one...!

Hope everything works out ok!
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hi there
i am a new member myself . i'm 32yer old and im diabetic for 26years . I have got the same problem -my left eye is really bad and my right one is catching up , im getting lucentis injections for about 2 years now and they are good, however i cannot get pregnant and as much as im terrified to become blind im desperate to become a mother. I've been offer illuvian injection i just don't know is it worth it? could anyone help? did anyone know someone who was pragnant and took lucentis injetions?

thanks magda
 
Flove14 said:
I'm dreading laser! Although people are saying it's not as bad as t seems!
Has anyone experienced a little floater after their injection? I've had one for about 3/4 days off and on, I've contacted the hospital or are going to check it on Monday
Click to expand...


Hi,
I had laser and what I can say is- do it! U won't feel any pain, good luck:)
 
Had my first laser this week and can honestly say it was fine, didn't feel a thing apart from one wee patch that was uncomfortable but disappears as quick as it came!
 
When I had my cataracts removed last year I did have a scan on my eyes at the pre op and this showed that I had early signs of dry macular degeneration there is no treatment for this only for wet macular when it is the injections in the eyes. Would an eye scan done when people are having cataract removal show if they had retinopathy
 
dont worry too much about laser treatment, they will numb the eye so you will not feel it, i had 2 treatments and now I am on anti-vegf 6 treatments, it is not bad at all. Good luck
 
Has anyone experienced a small patch of blurring after laser? I had my second session on my right eye two and a half weeks ago and just in the last couple of days it's been a bit blurry. Should I be worried?
 
Flove14 said:
Has anyone experienced a small patch of blurring after laser? I had my second session on my right eye two and a half weeks ago and just in the last couple of days it's been a bit blurry. Should I be worried?
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I wouldn't be worried but go to emergency eye clinic, A&E or phone the hospital. I would be pro-active. If you have any concerns tell the Drs. I was too afraid to bring up problems and I wish I had. It is your eye. Only you know what feels right or wrong. Err on caution.
 
Flove14 said:
Has anyone experienced a small patch of blurring after laser? I had my second session on my right eye two and a half weeks ago and just in the last couple of days it's been a bit blurry. Should I be worried?
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I would certainly contact the Ophthalmology Clinic and seek advice as @Trachet says.
 
HI there. I'm new here but felt like I had to join when I read this topic. I know it's a bit old, but I'd like to connect with people who have had similar experiences. I won't go into detail because my story is a long one, but basicallÿ I was seeing an eye dr almost monthly for constant infections. She noticed a bleed in my left eye but didn't send me for treatment. I trusted her so didn't give it a second thought but then in February of last year started losing my vision very rapidly. Was sent to the top retinologist in my area and was diagnosed with proliferative retinopathy and macular edema. I've been having laser and lucentis injections in both eyes since then. Things were going well but a blip in my diabetes control at the end of the year caused me to develop diabetic glaucoma in both eyes. I've just had my second surgery done to insert a tube and artificial lens in each eye (the lens was because they also removed cataracts).

I saw the first eye dr I had originally seen (and trusted) and she was "shocked at my rapid deterioration" and blamed the specialist for "making me legally blind"! Needless to say, I'm NEVER going back to her again!

It made me sad to read that mine isn't the only story like this out there. I can't believe so many people (and young people at that - I'm only 24) are losing their vision because Drs wait until the last minute to treat these conditions. I'm glad to read that injections and laser has helped so many though. The important thing is to speak up, get second opinions, fight for your sight! Ask lots of questions, get screened and get help fast when you need it. Oh and good blood glucose control too, but y'all know that already ;)
 
I'm so sorry to hear your story and thank you for sharing it here. It illustrates how specialised eye doctors are and how important it is for people with diabetes to be seen by medica retina specialists. Diabetic eye screening programmes sometimes have problems persuading people who are attending the Eye Clinic for reasons other than diabetic reinopathy to go to screening as well. The person, quite reasonably, thinks that they are seeing an eye specialist at the hospital so if there are any problems with retinopathy they will be dealt with.Unfortunately, many of these eye specialists would not be checking for diabetic retinopathy so the patient is falsely reassured.

Please note, I am not saying this is what happened in your case, I just think it helps illustrate the problem. If you haven't already, it would be worth expressing your concerns about the first doctor to PALS. There would be an investigation and there might be some changes made to procedures which could reduce the chances of this happening to someone else.

By the way, medical retina specialists don't delay treatment unnecessarily - every treatment has risks so should only be given when it is necessary and not before. Some degrees of retinopathy will improve when the patient's glucose control and blood pressure improve so ophthalmologists sometimes give patients advice to try and improve control then monitor them more frequently so if the retinopathy doesn't improve but gets worse, treatment can be given as soon as it is needed. If the retinopathy improves, treatment (and therefore risk of side-effects) may be avoided.
 
I had retinopathy and R1 Maculopathy in both eyes.
I got the shock of my life when they told me. I then was advised to have checks every 3 months as they wanted to start treatment - injection and laser.
I was a bit nervous and did loads of research. I tightened my control,went low carb and started cardio.
I went for another scan 3 months later, it was stable and had not got worse. I stayed stable for 2 years. I recently went for my scan and there was NO maculopathy or retinopathy in my eyes.
I also take opti health eye vitamins.
 
Fayefaye1429 said:
I agree it's shocking!! Sometimes I wish we did the insurance route. I'm not saying the nhs is bad but I think if you can afford something your at their wim at least insurance wise more things are accessible. I know a diabetic girl in America who has quite a few things we struggle to get. I know it's the old argument of paying verse free. I guess I hate the power of it all. End of rant there sorry.
The treatment I'm trying to get will save the nhs over 5,000 a year with me even when pointed out it's hard to get heard. I am quite shocked with the whole eye thing I got a letter through the post saying unfortunately your diabetes has entered both your eyes but no treatment at the moment and see you in a year. I was so up and lost it was only when my gp surgery rang and told me it was one eye and explained where I was that u got it. I personally found that disgraceful service
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Insurance may not cover this treatment as it's not considered an acute illness. Eyelea has to be given in a course of injections usually, rather than a one-off injection. I know this because I am undergoing this myself. Was symptomless, slim and undiagnosed T2, diagnosed because of retinal damage July 2015.
 
Good to know
Jaxb said:
Insurance may not cover this treatment as it's not considered an acute illness. Eyelea has to be given in a course of injections usually, rather than a one-off injection. I know this because I am undergoing this myself. Was symptomless, slim and undiagnosed T2, diagnosed because of retinal damage July 2015.
Click to expand...
Good to
 
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