Diabetic Macular Oedema/Edema

[SB6]

Hi, @SB6 ,

I can apreciate the anxiety with a diagnosis such as this.
I was ready to sell my van a number of years back...
It was also a kick in the teeth after pulling my BG socks up.

My experience with the eye doctors is they don't like to stick their neck out either way on a prognosis?

My last appointments after a scan as I get calling by a consultant goes, "tell me how do you feel about your eyesight?"
Me; "I don't know.. you tell me??"
Them, "how is your diabetes managment?"
Me, pretty good last A1c was.. How about my eyes?"

Then after 10 minutes of what seems like a game of poker.. Sometimes I'm asked how much alcohol n units I consume???

I'm eventally told the eyes have shown signs of improvement & "no fillings today!"

You have my best wishes...

This is all I can pray for I guess, to just buckle down, do the treatments and hope at some point it will reverse and I won't need more. The thought of anything like this longterm is intimidating, not to mention the fact a doctor said the more times you have it the more chances of complications increases. NOT ideal. I swear it was like a torture room the way she reeled off all the bad things, and my mind was wondering why not many online have mentioned the worst side effects of strokes and heart attacks. Finding it reassuring here as a few people have had it done, but did think there would be more. Seems a small community, but I am soooo grateful for those sharing experiences, lord knows how I would be hadn't I found you guys. Glad to hear yours are now stable, I bet that is a huge relief. And I hope they stay that way for you.

 

[SB6]

Haven't had experience of the OP's issue but have had various things done to my eyes, one cataract and numerous scrapes to the surface for a non diabetic eye issue I have.


Diabetics used to go blind a lot 50 or even 30 years ago, but the eye specialists have had many many decades to work out how to keep us seeing. So though they have to tell us every possible thing that might go wrong in 1 in 10000 cases, I reckon it's much better to assume they know what they are doing.

When I had my cataract done the list of things that might go wrong wasn't pleasant, but the eye was pretty well useless so I didn't have anything to lose. And I see really well through it now.

I still remember the doctors who insisted on telling me and my 13 year old daughter all the things that could go wrong if they abaesthetised her to set her broken arm. Sometimes it's better not to know...

Good luch @SB6

It was the 1 in 1000 and 1 in 2000 complications that put me in a tailspin, I am one of those "worst case scenario" people who thought OH NO!!! I don't want to be that statistic!!! So been trying to find people online who HAVE had complications, and weirdly, not found any yet. So don't know if thats a good thing. But trying to trust as seen a few people here have had it done and its all gone well for them, can only pray to have that same outcome.

 

[SB6]

Sometimes too much info is just as stressful as not enough. I have Fuchs endothelial corneal dystrophy (FED) , a reasonably rare eye disease, if left untreated leads to blindness. It’s an autosomal disease , but can occur randomly. Its left me blind in the dark, along with halos from lights, rainbows from reflective surfaces, double/triple vision, and blur both day and night. An oncoming car headlight during the day fills my entire vision with halos and starbursts.

I was diagnosed by chance. I went to get new eye glasses. At that time I assumed my very poor night vision was down to age so I didn’t mention it at the optician’s, but what I did mention was painful eyes in the morning and my light sensitivity. I mentioned this just as I got up to leave . The optometrist invited me to sit down again. She carried out some more tests and then told me I had guttata , but don’t google it as most people who have some guttata on their corneas don’t go on to develop Fuchs. I had never heard of guttata or Fuchs and so looked it up. Scary. If Fuchs develops then the only medical option is a corneal transplant.

I developed Fuchs. I am now being monitored by an eye specialist. The Fuchs has already caused cataracts, which I had removed a few months ago. I had prescription lenses inserted. Fuchs has also caused a severe astigmatism in my left eye. I now have to wear further prescription glasses on top of the prescription lenses placed in my eyes following cataract surgery.
I‘m currently waiting for corneal transplant.

I joined a site similar to this one, but for Fuchs. I have had to stop reading the comments, the overwhelming majority of corneal transplant go well, then there are the ones that don’t. My common sense tells me that people are more likely to chat on these sites when things are not going well than when they are. we just have to trust the medical teams who are here to help. I like my eye surgeon. He fills me with confidence that the transplant will go well when the time comes.

I feel you there, I have spent every day online looking for the worst case scenario stories. Its like I need to prepare myself. I am my own worst enemy there. What you have sounds frightening, but it is good they found it, sometimes the longer we dismiss things the more it develops (as has my diabetes which worsened by years of denial and a "ill eat right on monday" mentality) One thing I have found on my info hunt was cataract surgery seems lightyears ahead now, soooooo many people have had amazing results. I guess we are lucky in this day and age we have better treatments. It is all new to me and nobody to ask really so I am glad I found forums like this.

They put prescription lenses in your eyes? I cannot even begin to comprehend what it means? does it mean your lens prescription in an artificial lens IMPLANTED? because that is some futuristic kind of magic if it is, if not then insomnia has sent me insane (nearly 6am writing this).

 

[SB6]

I was told at the time by a consultant
. "10 years ago, we couldn't do anything."
Lol, I responded, 10 years back I didn't have this swizzle..

They seem to bring out new anti VEGF drug names? Eylia worked for me..

They didn't give me an option, Just said VABYSMO and thats it, I had to ask if they had info on it or at least a leaflet! Barely helpful, so like a fool I googled it and saw all the negatives for DMO/DME in the trial and immediately freaked myself out.

From all what I am reading, it seems Eylea is the best! I read Lucentis is safest, Eylea most effective. Not finding much on Vabysmo, which is very concerning, I know it is new-ish, but hoped more people would have shared experiences online, searched everywhere and even social media. So just up in air on knowledge there.

They booked me in for next week so in panic mode, and as stuuuuppppid as it sounds, feel I need to prepare myself, been looking up the symptoms of stroke/heart attacks/etc. What I really need is a parental lock on google. Hahaha.

PS- Love the word "swizzle" may have to steal that one.

 

[SB6]

My eye surgeon says the best way to look after eyes is to keep sugar as low as possible, and diabetes as controlled as possible

This is what I am trying to learn. Want to try the VLCD of shakes to kick start some weight loss (need to lose about 30lbs) but Ive had food aversion and disorders my whole life, since getting news of this at hospital, stupidly been massively restricting myself and if I eat, berating myself. Just need to calm down and follow everyones lead here. Unsure how good KETO may be though as don't want to raise cholesterol as apparently that can make DMO/DME worse. So its a minefield trying to find right info. Thankyou to everyone here though so far, its keeping me sane whilst I wait for this appointment. Was surprised to hear a nurse does the injections though rather than a doctor as all the videos I've seen are doctors.

 

[Jaylee]

This is all I can pray for I guess, to just buckle down, do the treatments and hope at some point it will reverse and I won't need more. The thought of anything like this longterm is intimidating, not to mention the fact a doctor said the more times you have it the more chances of complications increases. NOT ideal. I swear it was like a torture room the way she reeled off all the bad things, and my mind was wondering why not many online have mentioned the worst side effects of strokes and heart attacks. Finding it reassuring here as a few people have had it done, but did think there would be more. Seems a small community, but I am soooo grateful for those sharing experiences, lord knows how I would be hadn't I found you guys. Glad to hear yours are now stable, I bet that is a huge relief. And I hope they stay that way for you.

I was told the jabs were necessary.

I was told BG managment was beneficial along with blood pressure?
But then that whole BP thing is tied in with potential stroke or CA issues anyway..

I'm also a singer in a heavy metal band.
I read a tabloid article from a T1 singing in a "Britain's got tallent" show years back saying she was advised "it would make her go blind???"
A bit over the top, if you ask me..
I sensed the journalist was just putting a "spin" on the starlet's condition..

 

[MissMuffett]

I’ve been diagnosed with diabetic retinopathy a couple of years ago, earlier this year I was diagnosed having macular degeneration and recently diabetic maculopathy (is that the same thing as Macular Oedema?). Very frightening! After frantically searching the t’internet I found the ‘Carnivore Doctor’ on YouTube, (she is an eye surgeon in USA) and although I’m not fully carnivore yet, following her information, I reduced my carbs and stopped eating all processed food, checking the food labels to make sure they didn’t contain seed oils (veg oils), even making my own mayonnaise. At the last check up I was told my retinopathy had improved and they’re keeping and eye on the diabetic maculopathy (no pun intended).

Just letting you know what I’ve done that seems to be helping me and sending out a big hug to you.

 

[Melgar]

I feel you there, I have spent every day online looking for the worst case scenario stories. Its like I need to prepare myself. I am my own worst enemy there. What you have sounds frightening, but it is good they found it, sometimes the longer we dismiss things the more it develops (as has my diabetes which worsened by years of denial and a "ill eat right on monday" mentality) One thing I have found on my info hunt was cataract surgery seems lightyears ahead now, soooooo many people have had amazing results. I guess we are lucky in this day and age we have better treatments. It is all new to me and nobody to ask really so I am glad I found forums like this.

They put prescription lenses in your eyes? I cannot even begin to comprehend what it means? does it mean your lens prescription in an artificial lens IMPLANTED? because that is some futuristic kind of magic if it is, if not then insomnia has sent me insane (nearly 6am writing this).

“They put prescription lenses in your eyes? I cannot even begin to comprehend what it means?” When I had my cataracts done instead of the regular lenses they place in your eyes, I opted for the same prescription lenses that I had in my eye glasses.

 

[Jaylee]

“They put prescription lenses in your eyes? I cannot even begin to comprehend what it means?” When I had my cataracts done instead of the regular lenses they place in your eyes, I opted for the same prescription lenses that I had in my eye glasses.

My mum had the cataracts done 35? Years ago..
She literally couldn't see at the point of the procedure.
Afterwards, she only needed reading glasses.

 

[SB6]

I was told the jabs were necessary.

I was told BG managment was beneficial along with blood pressure?
But then that whole BP thing is tied in with potential stroke or CA issues anyway..

I'm also a singer in a heavy metal band.
I read a tabloid article from a T1 singing in a "Britain's got tallent" show years back saying she was advised "it would make her go blind???"
A bit over the top, if you ask me..
I sensed the journalist was just putting a "spin" on the starlet's condition..

I think the article you mean might have been referring to the guidelines they say, like don't lift anything heavy, not holding breath, no pressure build up etc as it says can create bleeds from the pressure. I have no idea, but if it gets me out of housework then.... it is good advice, haha. As for singing, I can kind of understand that as if say in a rock band theres a lot more pressure and energy.

I dunno.... I think I am over researching everything to be prepared. I am still clueless though.

 

[SB6]

I’ve been diagnosed with diabetic retinopathy a couple of years ago, earlier this year I was diagnosed having macular degeneration and recently diabetic maculopathy (is that the same thing as Macular Oedema?). Very frightening! After frantically searching the t’internet I found the ‘Carnivore Doctor’ on YouTube, (she is an eye surgeon in USA) and although I’m not fully carnivore yet, following her information, I reduced my carbs and stopped eating all processed food, checking the food labels to make sure they didn’t contain seed oils (veg oils), even making my own mayonnaise. At the last check up I was told my retinopathy had improved and they’re keeping and eye on the diabetic maculopathy (no pun intended).

Just letting you know what I’ve done that seems to be helping me and sending out a big hug to you.

I will check that out, I spent my life vegetarian and the only meat I could eat is chicken (rest cause major IBS flare ups) but everyone would benefit from quitting ultra processed foods in general. I have a LOT of learning to do. I can only hope low carb/keto style diets agree with me, can't lie as the only foods I like are carbs/sugars. Ohhhhhh to have the superpower of eating what we want, forget invisability, immaculate health regardless of our actions would be a good one right now.

 

[SB6]

“They put prescription lenses in your eyes? I cannot even begin to comprehend what it means?” When I had my cataracts done instead of the regular lenses they place in your eyes, I opted for the same prescription lenses that I had in my eye glasses.

That is futuristic!!!!

 

[Melgar]

That is futuristic!!!!

It is but sadly on one of my follow up visits to my eye specialist suggested I get progressive glasses and quickly scribbled out the specifications for said eye glasses. I could not even read the big bold letters on the top line of the eye chart.

 

[SB6]

It is but sadly on one of my follow up visits to my eye specialist suggested I get progressive glasses and quickly scribbled out the specifications for said eye glasses. I could not even read the big bold letters on the top line of the eye chart.

I hope your eyes improve, you have definitely been through a LOT. I can't imagine, I mean what I am going through is ridiculous in comparison.

Your lenses sound so futuristic, I thought Elon Musk talking about brain implants was sooooo out of this world but didn't know you can get your actual prescription implanted? I wonder if this ever becomes a thing as noticing a lot of people badmouthing LASIK and surgeries like that lately.

 

[Melgar]

I hope your eyes improve, you have definitely been through a LOT. I can't imagine, I mean what I am going through is ridiculous in comparison.

Your lenses sound so futuristic, I thought Elon Musk talking about brain implants was sooooo out of this world but didn't know you can get your actual prescription implanted? I wonder if this ever becomes a thing as noticing a lot of people badmouthing LASIK and surgeries like that lately.

I think anything to do with eyes is anxiety provoking. You yourself are going through a lot. It’s surprising how many members on this forum are having eye issues, diabetes related or not.

 

[SB6]

I think anything to do with eyes is anxiety provoking. You yourself are going through a lot. It’s surprising how many members on this forum are having eye issues, diabetes related or not.

It is my worst fear, though tbh developing lots of chronic health issues and disabilities wasn't on my life plan card either. I am already deaf so scared as hell about losing any vision.

I'm more surprised more people here haven't replied as it says statistically the majority of us with Diabetes will need these treatments at some point. It is devastating really. Wish I was one of those who gets away with it and never has any complications, but time has proven different for me. Just trying to stay calm as my appointment is next week, I am STUPIDLY looking at the complications online to mentally prepare myself so know what to look out for. I don't know why I have to be sooooooo prepared as it just skyrockets the anxiety. I have no idea how you manage with your condition, it sounds overwhelming.

I do believe though, people like me looking for answers or advice about these new things, need to have these discussions. I don't think I ever really took it as seriously as I do now. It has definitely scared me.

 

[Jaylee]

I think the article you mean might have been referring to the guidelines they say, like don't lift anything heavy, not holding breath, no pressure build up etc as it says can create bleeds from the pressure. I have no idea, but if it gets me out of housework then.... it is good advice, haha. As for singing, I can kind of understand that as if say in a rock band theres a lot more pressure and energy.

I dunno.... I think I am over researching everything to be prepared. I am still clueless though.

I feel once you've had the first treatment, there will be less anxiety..
Uncertainty is always daunting.

Lol, I actually did I gig after one jab..
I was fine the following day but the stage lighting that night was a little trippy..

 

[jjraak]

I think anything to do with eyes is anxiety provoking. You yourself are going through a lot. It’s surprising how many members on this forum are having eye issues, diabetes related or not.

Agree.

I have the utmost sympathy for @SB6 , yourself & others.

The very idea of what I was expecting had me doubting if I should go ahead.

Very understandable reaction from @SB6 regarding the injections.

Wish I hadn't needed my op, but glad it's over and went as smooth as it did.

Just to note mine wasn't diabetes related .

Eye doctors say it may have happened at anytime, but likely age related.

( I can't prove it caused it, but being hit by a van, hard enough to knock me unconscious, despite wearing a helmet, sure as heck didn't help with any sight loss )

Sept 21..no issues at diabetic eye scan.
Sept 22 delamination quite advanced ...mmmhh

Bottom line is how we can take eyesight for granted.

Bonus of T2D, (and type 1 etc)
Is perhaps that deeper monitoring.

it was how mine was spotted so quickly....

A little info on my procedure.
Note: not everyone needs or is accepted for surgery.
My vision was quite affected, others may not be so bad.

Epiretinal Membrane (Macular pucker) | Hull University Teaching Hospitals NHS Trust

This leaflet has been produced to give you general information about your condition. Most of your questions should be answered by this leaflet. It is not intended to replace the discussion between you…

www.hey.nhs.uk