Diabetic Macular Oedema/Edema

[SB6]

Please help!
I have waited over 5 weeks after being diagnosed with Diabetic Macular Oedema to FINALLY hear from a consultant, and still no wiser from it. Spent over a month having daily panic attacks from them being on holiday and not being able to ask questions or know anything. Read a LOT on google, and here, and still clueless.

What level is it bad? or severe? I have 496 microns in one eye and near 450 in other, they have now booked me in for Anti-VEGF injection of Vabysmo (can't find many people who have had this specific drug - which worries me) was hoping to find reviews and experiences online but for this specific brand drug, not finding much.

I am hoping you guys can help, as to be honest I have learned more in this forum than from my own Doctors/Consultants. The latter of which won't answer my questions and her secretary said she is booked up for over a year and if I want to ask her any questions about the procedure etc I have to pay over £350 to pay private.

I am just floored, I thought we are allowed to access the doctors and consultants who are in charge of our care? I even asked if there were any other consultants I could speak to, and apparently not.

I admittedly did have some random Q's, I read online Minoxidil can cause a VEGF response, and was curious if that could have caused this, or would hyperbaric oxygen therapy be helpful (as can apparently help with inflammation in body, oxygenate the body, and improve blood flow) but got zero answers.
Also macushield, mostly for AMD but I was curious if it could help DME/DMO.

I've tried to read others experiences of this after the Doctor reeled off her "you have 1 in 1000 chances of xyz happening" in the complications list, which had me in a tailspin, I have major anxiety and high stress (due to something I have been through recently) so asked if I could think about it and a week on decided to just do it (in a rare moment of bravery) but everyone was on holiday, my consultant, her secretary AND the doctor. Could not believe it (then again it was end of august/summer holidays). I finally after being ignored asked "How severe is the level I am at, how urgently do I need treatment, and HOW do I do this?" and I got back It is enough to need treatment, the threshold is 400 and I am 496 and clinically significant, will soon need laser.

So I am devastated, It said on my letter I met the threshold of 400 (so assumed it was on lower end) but hearing the numbers, I am devastated. What upsets me most is this year is the year I FINALLY started to buckle down with my control, but it seems the more I have improved my blood sugars the worse my eyes have got.

I was always in the 100s, never took it seriously, but last year got to 77 and now 56, still awful! but I am one of those with hormonal insulin resistance and an inability to tolerate the meds, they metabolise too fast, even slow release. So its been a case of struggling. This is the best I have done so far, still far to go, but since the improvements, the retinopathy and maculopathy and now diabetic macular oedema have worsened. I am absolutely petrified.


I am looking for answers, I know what the process is now with the numbing and injection and monthly injections, but I want to know.....

What should I look out for? what complications can happen (I have seen a lot who say it didn't work, or worsened it, or developed worse vision, or lost vision, or developed cataracts) So I guess I want to prepare myself for the bad things, had anyone had good results? anyone had bad? obviously those who developed blood clots/strokes and heart attacks would likely not be as many (unless relatives mentioning it here) as I haven't seen many posts on the worst case scenarios. But I am trying to keep hope, but also trying to prepare myself for the worst happening. All they said was, if you see black spots or flashes, thats bad, they haven't explained what happens after treatment (I saw one person on here say you get black bubbles in vision) so kind of want to know so I am not panicking and going to A&E for something considered "fine"/"normal".

I am already deaf, no sense of smell, and with multiple disabilities, the last thing I want or need is to lose vision.

Can anyone share their experiences? good or bad?

Please help me to calm down, I have over a week of panicking about it, worrying I will be one of those statistics that loses vision or has a stroke/heart attack and well, no longer be here. Theres not THAT much out there so its sad we have to find forums to try find answers and seek each other out for reviews and reassurance. I am trying to mentally deal with what complications could happen.

 

[Hopeful34]

Hi @SB6 I'm sorry you're having such a difficult time, and can't get any answers from the medics. I can't answer your questions I'm afraid, but am tagging @Nicola M who has had treatment for this, and wanted to wish you all the best when you have the treatment. Take care.

 

[Melgar]

Hello @SB6 , I’m sorry to hear you are going through all this stress over your eyesight. I too have a serious eye disease so I know how stressful it can be. If you go to the top right corner of this page you will see a search icon, the magnifying glass, press it and a drop down search box should appear, put in Macular Oedema and search. It should come up with a number of posts on the subject by other members suffering from the same condition. Hopefully you will get some answers.
Wishing you the best, Mel

 

[SB6]

Hi @SB6 I'm sorry you're having such a difficult time, and can't get any answers from the medics. I can't answer your questions I'm afraid, but am tagging @Nicola M who has had treatment for this, and wanted to wish you all the best when you have the treatment. Take care.

Hi, Thanks for even taking the time to read my message, I feel like my posts disappear into the abyss on here. It genuinely has shocked me how little the consultant will communicate with me. I thought when you have any procedure it would be explained to you and any questions answered. I don't know if this is the "norm" with consultants or im just being an idiot pestering her secretary with questions.

Was basically trying to find out if there is or was anything I can do to improve the condition in meantime. The desperation has been insane with me going down rabbit holes trying to find out if anthing ive done exacerbated it or if anything can help. Still clueless. The scary part for me is not finding anyone who has had Vabysmo injections.

 

[SB6]

Hello @SB6 , I’m sorry to hear you are going through all this stress over your eyesight. I too have a serious eye disease so I know how stressful it can be. If you go to the top right corner of this page you will see a search icon, the magnifying glass, press it and a drop down search box should appear, put in Macular Oedema and search. It should come up with a number of posts on the subject by other members suffering from the same condition. Hopefully you will get some answers.
Wishing you the best, Mel

Thankyou, I'm sorry to hear about your eyesight, I do hope you are ok as there is nothing scarier! I will do that, struggling to find much info as didnt realise there are different macular oedemas with different pathology and different treatments. Its such a huge thing to try research. The worst part is most of the things you find.... are scary! I am trying to desensitize myself to the worst case scenarios just incase and honestly, just ruining my mental health......****, but oh well, I am learning things, silver lining I guess, haha.

 

[jjraak]

All they said was, if you see black spots or flashes, thats bad, they haven't explained what happens after treatment (I saw one person on here say you get black bubbles in vision) so kind of want to know so I am not panicking and going to A&E for something considered "fine"/"normal

Hi @SB6 .

I can hear the anxiety in your post.

I haven't had macular odema, but I have had to have my eye operated on, so maybe my experience can offer some help.

My procedure was to make a small cut in eye, and 'scrape' a film from rear of my eye, just to give an idea of how invasive it was.

I didn't have injection that I'm aware of ( though I do believe one of my posters in a group has her partner endure these ? )

Will ask her to see if she has any input for you .

I can only say I had no pain .I was however put out for the operation .

Maybe what the would be doing in your case IF needed .
and that experience was almost painless.

I awoke with almost zero vision in the eye.

It was less bloodshot than expected.

The black 'bubble' relates to the fluids IN the eye.

As I understood it our bodies fill and regulate the fluid IN our eyes .

During such ops that fluid need to be drained off .

A gaseous substance is put into eye (I presume to maintain pressure & shape.)

Over time (mine was circa a month) that bubble becomes less & less (deflates) as our bodies refill the liquid.

It felt like I was looking through a fish bowl at times, the water line (bubble) moving & gently sloshing around as i moved my head (most disconcerting at first and then a tad amusing )

As said, over the month the bubble disappeared & vision returned in the whole eye .

The operation is estimated to take 6 months to a year to show max improvement, and I'm at month 3.

I had little pain during this time
A steadily improving vision from zero to about where I was before op.

I had to wear an eye shield at night for six weeks to protect the eye.

And I could NOT fly until that bubble had gone.
(A point worth noting if holidays booked close to the month of op )

I was told IF eyesight deteriorates dramatically to go back to eye hospital asap as an A&E patient .

Happily that hadn't happened.
Pretty sure if procedures done, you will get more advice before undergoing it.

Not making light of it
(Suffer increased anxiety here myself )

But I didn't die, suffer stroke or any other issues.

I felt the surgeons performed what to me was invasive & scary surgery
But to them was run of the mill.

& Performed it exceptionally well .

Little pain
Some inconvenience
(Blind on left side for a few weeks )
And no worse off now than I was
Tho obviously praying for a full recovery of vision (the reason for the op).

I'm not a spring chicken either, if that helps.

All operations & procedures have an inherent risk, I'd say.

Much like air travel
Planes can crash, but millions of us trust them to deliver us around the world
And in the vast majority of cases, they do.

I hear your concerns
(Been there, done that )

In my experience, the surgeons know what they are doing .
The procedure itself was relatively painless .
And recovery is ongoing.

The warning of cataracts is real.
(I presume the disturbance in the eye increases that risk)

However, while mine was not cataract surgery, so many seeing the eye patch or shield asked about the op.

Pleasantly surprised how many sympathised & explained they had had cataract surgery & how well it went for them.

So IF I go on to develop them (please no )
I feel more confident about it then I did.

A long post, but I just wanted to reach out .

Not specifically your issue, but an inside opinion that eye surgery or procedures, while not on our wishlist of things we'd want to happen to us , can from my experience of it, be a lot less daunting than I had anticipated.

I'm hoping whatever you choose, it is as painless as mine & with the utmost prospect of curing your vision difficulties.

Take care.

Ps I have heard and tried a breathing technique to help when really anxious.

It's to take a deep breathe, breathe out a TINY bit, then breathe in another deep breathe

Then slowly exhale.

I feel a lessening of my stress levels when I do that.

Might work for you too .

 

[SB6]

Hi @SB6 .

I can hear the anxiety in your post.

I haven't had macular odema, but I have had to have my eye operated on, so maybe my experience can offer some help.

My procedure was to make a small cut in eye, and 'scrape' a film from rear of my eye, just to give an idea of how invasive it was.

I didn't have injection that I'm aware of ( though I do believe one of my posters in a group has her partner endure these ? )

Will ask her to see if she has any input for you .

I can only say I had no pain .I was however put out for the operation .

Maybe what the would be doing in your case IF needed .
and that experience was almost painless.

I awoke with almost zero vision in the eye.

It was less bloodshot than expected.

The black 'bubble' relates to the fluids IN the eye.

As I understood it our bodies fill and regulate the fluid IN our eyes .

During such ops that fluid need to be drained off .

A gaseous substance is put into eye (I presume to maintain pressure & shape.)

Over time (mine was circa a month) that bubble becomes less & less (deflates) as our bodies refill the liquid.

It felt like I was looking through a fish bowl at times, the water line (bubble) moving & gently sloshing around as i moved my head (most disconcerting at first and then a tad amusing )

As said, over the month the bubble disappeared & vision returned in the whole eye .

The operation is estimated to take 6 months to a year to show max improvement, and I'm at month 3.

I had little pain during this time
A steadily improving vision from zero to about where I was before op.

I had to wear an eye shield at night for six weeks to protect the eye.

And I could NOT fly until that bubble had gone.
(A point worth noting if holidays booked close to the month of op )

I was told IF eyesight deteriorates dramatically to go back to eye hospital asap as an A&E patient .

Happily that hadn't happened.
Pretty sure if procedures done, you will get more advice before undergoing it.

Not making light of it
(Suffer increased anxiety here myself )

But I didn't die, suffer stroke or any other issues.

I felt the surgeons performed what to me was invasive & scary surgery
But to them was run of the mill.

& Performed it exceptionally well .

Little pain
Some inconvenience
(Blind on left side for a few weeks )
And no worse off now than I was
Tho obviously praying for a full recovery of vision (the reason for the op).

I'm not a spring chicken either, if that helps.

All operations & procedures have an inherent risk, I'd say.

Much like air travel
Planes can crash, but millions of us trust them to deliver us around the world
And in the vast majority of cases, they do.

I hear your concerns
(Been there, done that )

In my experience, the surgeons know what they are doing .
The procedure itself was relatively painless .
And recovery is ongoing.

The warning of cataracts is real.
(I presume the disturbance in the eye increases that risk)

However, while mine was not cataract surgery, so many seeing the eye patch or shield asked about the op.

Pleasantly surprised how many sympathised & explained they had had cataract surgery & how well it went for them.

So IF I go on to develop them (please no )
I feel more confident about it then I did.

A long post, but I just wanted to reach out .

Not specifically your issue, but an inside opinion that eye surgery or procedures, while not on our wishlist of things we'd want to happen to us , can from my experience of it, be a lot less daunting than I had anticipated.

I'm hoping whatever you choose, it is as painless as mine & with the utmost prospect of curing your vision difficulties.

Take care.

Ps I have heard and tried a breathing technique to help when really anxious.

It's to take a deep breathe, breathe out a TINY bit, then breathe in another deep breathe

Then slowly exhale.

I feel a lessening of my stress levels when I do that.

Might work for you too .

Thankyou for your reply, it wasn't too long, I love to learn and wow, you went through a lot and I am soooo glad you are fine. I think if you are like me, you expect and plan for the worst. Yours sounds like a vitrectomy (spelling likely wrong) I did a little research on that as a complication that can happen from the injections. I fully went down the rabbit hole!

However, when you mention cataracts, honestly everthing I have read on peoples experiences has been positive, it seems (if anything) the better procedure to have in improving vision. My father is actually needing to have this done soon so I read a little on that too. What you had is VERY invasive and it sounds soooo scary, so you were so brave to even do it.

Ive got that stupid dilemma of "I don't want to do it, but have to, because if I don't, worse things may happen" and thats kind of a mantra I am trying to tell myself to calm the hell down.

Done the breathing thing, doesn't really help the anxiety or stress (did actually wonder if stress had exacerbated this as had the most insane past 10months of death/drama/family issues). But this has definitely distracted from that.

I feel like my default state is anxious, never used to be, seemed to happen as I got older, drives me insane. Its like that devil on your shoulder torturing you. I do sort of blame the consultant for this increasing, I guess all I wanted was someone to fully explain things to me and answer some questions I had, however insane they were. But cannot reach them. I wish I could get another consultant tbh but unsure if NHS allows that.

And its good you posted your experience as although it isnt what I am having done, it will be useful for someone looking it up as I spent many MANY hours here trying to find answers myself. So hope it helps them.

 

[jjraak]

you went through a lot and I am soooo glad you are fine.

And some ..lol
Tip of the iceberg, really.

Glad it offered something .

Good luck finding the info you seek and with any procedures, if it comes to that .

 

[SB6]

Thanks, not getting many answers, even here, wonder if its because I posted my Q so late at night, got over a week of panic to get through now. Really wish I didn't need the procedure but know if I don't, I am only harming myself. The dilemma is awwwwffullll. Hope your eyes are ok now, they've gone through a LOOOOTTT! so hope it worked/works.

 

[Hopeful34]

Have you done a search of the forums as @Melgar suggested, as I remember reading posts there on macular oedema. I believe @Jaylee had these injections, so he may be able to help.

 

[MrsA2]

Hi @SB6
I've had 3 operations on the same eye, not for macula oedema but for a genetic problem I was born with.
Each time has been totally painless, perhaps bloodshot for a few days after. Blurriness can continue for several weeks, but that's because anything to with eyes is slow. Just the way it is. We're used to, say skin, healing in a few days but eyes may take months. The changes are so gradual that often I don't realise its getting clearer. Equally with mine I don't immediately notice when it's getting worse which is why it's important to keep up with regular checks and follow ups.
I've found my eye consultant and his team to be kind, knowledgeable and professional but I wouldn't expect to have access to him other than at appointments. You will probably be given a number to call if certain things start happening after a procedure. Or you could call the eye clinic to ask general questions.
For my last op, I had lots of questions which only occurred to me after the referral appointment back in February, but I wrote them down and asked them when attending for the operation just 2 weeks ago.
The thought I keep in my mind is that they wouldn't waste time, money and resources performing a procedure that either isn't necessary or doesn't have a good chance of achieving something. They are doing it to help you.

If your anxiety makes you so stressed have you thought about asking your GP for some sort of tranquilliser to relax you before the procedure?

 

[SB6]

Have you done a search of the forums as @Melgar suggested, as I remember reading posts there on macular oedema. I believe @Jaylee had these injections, so he may be able to help.

Hi, Yes not found too much though, and not many have commented so just assuming not many here have had this condition or have not seen the message. Maybe it isn't a common condition? And yes I think I have spoken to Jaylee before (I recognise the name). Just curious of peoples experiences, good or bad (so can prepare myself) and if it helped or not, seen a couple people say it got worse and some say it got better, obviously in a dream world I wouldn't need it doing, but can only hope and pray it works and I don't need to in future should I need it done, as seen some people say it worked and they are in remission (of sorts).

 

[SB6]

Hi @SB6
I've had 3 operations on the same eye, not for macula oedema but for a genetic problem I was born with.
Each time has been totally painless, perhaps bloodshot for a few days after. Blurriness can continue for several weeks, but that's because anything to with eyes is slow. Just the way it is. We're used to, say skin, healing in a few days but eyes may take months. The changes are so gradual that often I don't realise its getting clearer. Equally with mine I don't immediately notice when it's getting worse which is why it's important to keep up with regular checks and follow ups.
I've found my eye consultant and his team to be kind, knowledgeable and professional but I wouldn't expect to have access to him other than at appointments. You will probably be given a number to call if certain things start happening after a procedure. Or you could call the eye clinic to ask general questions.
For my last op, I had lots of questions which only occurred to me after the referral appointment back in February, but I wrote them down and asked them when attending for the operation just 2 weeks ago.
The thought I keep in my mind is that they wouldn't waste time, money and resources performing a procedure that either isn't necessary or doesn't have a good chance of achieving something. They are doing it to help you.

If your anxiety makes you so stressed have you thought about asking your GP for some sort of tranquilliser to relax you bef

True, I know I need to trust they wouldn't suggest this treatment if it doesn't work. I am just scared of the complications, Not finding many people online with this specific condition really with reviews or experiences.

I hope your eye is ok now. It is annoying when you see a doctor though and only as you come away do you remember questions, that it me allllll over. I cant even speak to my consultant though, not even via email, would only take her minutes too. As for anxiety, I did ask my doctors and they haven't suggested anything other than to do a consult again. Ive had three already about the panic attacks Ive had over this and they kind of dismiss it and say there are helplines if my mental health is affected. Not much help really.

It isn't the procedure freaking me out really, I watched a video online of someone having it done, it is the possible complications. I do always go to the worst case scenarios in my head. Trying to be hopeful. Trying to trust this and trying to tell myself to just do it.

 

[jjraak]

For my last op, I had lots of questions which only occurred to me after the referral appointment back in February, but I wrote them down and asked them when attending for the operation just 2 weeks ago.

Best wishes for a smooth & speedy recovery.

And a very informative post @MrsA2
And I'd agree on the tortoise like speed of eyes in comparison to other parts of us.

 

[Jaylee]

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...

 

[EllieM]

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

 

[Melgar]

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.

 

[Jaylee]

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.

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..

 

[jjraak]

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.

Oh @Melgar that sounds horrid .

An aptly named condition, who says physicians don't have a sense of humour.

Glad some work was done successfully and you have such a nicely balanced attitude about it all.

People do talk & make more noise when things go wrong, like you say.


And I think your last sentence matches my outlook too

Best wishes for when & if that operation time comes.

 

[MrsA2]

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