Macula edema

[Helen1981]

I am feeling very anxious and frightened and am looking for some advice please. I have been on the 3 month surveillance programme for my eyes for the past two years now, and my results recently said that I must go back again in September. However, I went to see my ophthalmologist yesterday and he did an OCT scan which has showed some swelling/fluid. Because my vision is so good, he doesn’t feel that I need to start treatment now, and says I can wait until September before being seen again. But is this safe to leave it as it is if I have edema? And has anyone else had edema that they have managed to resolve by themselves without treatment? Thank you, Helen

 

[LindiePops]

I was in the same position as yourself regarding my eyes. Like you, no treatment (apart from a quick laser treatment in one eye) was deemed necessary as my vision wasn't affected. The best advice I can give is to keep your blood sugar in check as this really does help reduce the fluid in your eyes. After visits every 6 to 9 months for approx 5 years, I was finally 'discharged' from the hospital checks as the fluid had resolved itself. I'm now safe to just have my eyes checked every couple of years as part of the standard Diabetic care. Hope this helps.

 

[Helen1981]

I was in the same position as yourself regarding my eyes. Like you, no treatment (apart from a quick laser treatment in one eye) was deemed necessary as my vision wasn't affected. The best advice I can give is to keep your blood sugar in check as this really does help reduce the fluid in your eyes. After visits every 6 to 9 months for approx 5 years, I was finally 'discharged' from the hospital checks as the fluid had resolved itself. I'm now safe to just have my eyes checked every couple of years as part of the standard Diabetic care. Hope this helps.

Thank you for your advice, and it’s great news to hear that you were discharged from the hospital checks. I hope I can achieve the same, but I am definitely struggling with my control, so it always worries me that things will just get worse.

 

[coby]

I am feeling very anxious and frightened and am looking for some advice please. I have been on the 3 month surveillance programme for my eyes for the past two years now, and my results recently said that I must go back again in September. However, I went to see my ophthalmologist yesterday and he did an OCT scan which has showed some swelling/fluid. Because my vision is so good, he doesn’t feel that I need to start treatment now, and says I can wait until September before being seen again. But is this safe to leave it as it is if I have edema? And has anyone else had edema that they have managed to resolve by themselves without treatment? Thank you, Helen

Hi @Helen1981 Yes, I have had major surgery on my left eye (last November) and when I saw my Optician three months later had difficulty reading the board of letters. She scanned my eye and discovered it was full of fluid, perhaps caused during surgery. I was sent to the Macular dept for tests but that was healthy, but I was prescribed Accular drops to dry up the fluid, which worked. I've had allsorts done to that eye this past 8 months, including further surgery, but with Laser the last time, and nothing is bothersome or worrying so please don't be scared. As someone here also said please DO get controll of your blood sugars as it helps enormously. Our eyes are in continuous danger from the high levels of glucose in the blood, especially our eyes. It can be controlled and reversed xx

 

[Helen1981]

Hi @Helen1981 Yes, I have had major surgery on my left eye (last November) and when I saw my Optician three months later had difficulty reading the board of letters. She scanned my eye and discovered it was full of fluid, perhaps caused during surgery. I was sent to the Macular dept for tests but that was healthy, but I was prescribed Accular drops to dry up the fluid, which worked. I've had allsorts done to that eye this past 8 months, including further surgery, but with Laser the last time, and nothing is bothersome or worrying so please don't be scared. As someone here also said please DO get controll of your blood sugars as it helps enormously. Our eyes are in continuous danger from the high levels of glucose in the blood, especially our eyes. It can be controlled and reversed xx

Thank you so much for your reply. It sounds like you have had a lot done to your eye, hope all is ok for you now. Thank you, I’ll continue to do all I can with my blood sugars. It remains a constant challenge but I’ll continue to do my best. Thank you xx

 

[coby]

Thank you so much for your reply. It sounds like you have had a lot done to your eye, hope all is ok for you now. Thank you, I’ll continue to do all I can with my blood sugars. It remains a constant challenge but I’ll continue to do my best. Thank you xx

 

[coby]

@Helen1981 Obviously I cannot give advice on how you tackle your control because I am Type 2, which is quite different.
I wish you all the best xx

 

[Helen1981]

@Helen1981 Obviously I cannot give advice on how you tackle your control because I am Type 2, which is quite different.
I wish you all the best xx

Thank you so much. All the best to you too xx

 

[Treebo]

Type two.
I'm freaking out.
Last year, diagnosed with all sorts in the eyes, cataracts ( too small to treat), and Macula and Retinopathy.
Since July I've had large floaters in Right Eye.
In December I was told I'd need to be seen every 8 weeks. The next consultant said oh no, you have all these things but shall not see you for six months.
In last 2-3 weeks eyesight in my right eye rapidly deteriorated. Everything I'd looked up on the subject said I should report it immediately. So far, I've phoned consultants office, told to go to local optician, optician said go to a center city hospital some distance away, they said no go to a hospital in the south west of the city, they said - no go back to the consultant on Monday. Finally got an emergency appointment and they said Diabetic Macula Edema. which is a new one.
They actually said it says on your notes to report any changes immediately, and I wish I'd known that !!!! when I was going from pillar to post as they all seemed to think I was over reacting.
I've spent the last week thinking I had Age Related Macula Degeneration which as far as I know is not reversable...
Anyway. I need eye injections. But my appointment is for three weeks time. It seems to be getting worse.
Should i make a fuss and try to get an earlier appointment.
The various people I saw have put incorrect information on my NHS app notes... so its even more confusing.
Not even sure why I'm writing this

 

[Hopeful34]

Welcome to the forum @Treebo

So sorry you've had such a run around to get to see the right person, and now need eye injections. I'd definitely contact the clinic again to let them know your symptoms are getting worse - that's not making a fuss, it's just keeping them up to date, and looking after your eyes, which is important.

Tagging @Jaylee one of our members, who I believe has had these injections in the past.

 

[Treebo]

Welcome to the forum @Treebo

So sorry you've had such a run around to get to see the right person, and now need eye injections. I'd definitely contact the clinic again to let them know your symptoms are getting worse - that's not making a fuss, it's just keeping them up to date, and looking after your eyes, which is important.

Tagging @Jaylee one of our members, who I believe has had these injections in the past.

Thank you. That's kind of you. It would be good to hear how they got on. I'm glad that injections are possible, but I'm just so worried about the differing opinions on what I've got and the inaccurate notes now on record, plus the delays. Hopefully it will work out I guess.

 

[Jaylee]

Hi @Treebo ,

I was diagnosed with macula oedema 10 years ago?
I had treatment with anti-VEGF injections in both eyes on & off over a 3 year period.
Then I had the “all clear.”

Moving on 7 years with the all clear. Not me needing any more treatments, my monthly checks went down to 6 monthly then a year?
2.5 months back it was found I needed a course of 3 injections in the right eye..
They got me the first jab in a couple of weeks. The last jab hopefully will be on the 23rd of April..

From my experience in the past. I will have further scans then an appropriate action should ensue.
In the past this meant walking through to the eye ward next door & prepped for a jab.
Hopefully I won’t need any more.. at least for a while.

But the results were encouraging, at least for 7 years?
There seems to be improvement in the right eye already, after the 2 recent injections..

 

[Treebo]

Thank you so much @Hopeful34 for tagging in @Jaylee. I really appreciate you sharing your experience @Jaylee. It really does help to hear your treatment was successful. I've spent the week worrying that this was not reversible and that I was going to lose my independence ( based on previous consultations)
I guess I can feel better that the injections are on the table now.

So my plan is.
1)Ring them to ask about waiting nearly a month for the injections if it gets worse in the meantime, as this all happened so suddenly. (eg they were told by one consultant to monitor every 8 weeks, but decided to go for every six months or I could have been seen a month ago)

2)See if its possible to correct the information on my GP notes, there is a confusion of diagnosis,

3) Try a Libre 2 monitor. I can't afford to do this for long tho but it will keep a closer eye on blood sugars.
I more than halved my H reading since diagnosis 18 months ago to pre diabetes level... but blood sugar is a yo yo, sometimes dipping below 5 or waking up over 7. This morning it was 9. For the last two months I've been doing finger prick monitor 3-4 times a day.
4) Up the exercise whenever it seems higher. However, its difficult to do this immediately first thing, so its hard to get the count down when I'm awake at 7.am.
5) I've already done everything I can to change diet but maybe there's still some tweaks I can make.

Any other ideas welcome. Its been helpful writing this all down. Thankyou.

 

[Jaylee]

Thank you so much @Hopeful34 for tagging in @Jaylee. I really appreciate you sharing your experience @Jaylee. It really does help to hear your treatment was successful. I've spent the week worrying that this was not reversible and that I was going to lose my independence ( based on previous consultations)
I guess I can feel better that the injections are on the table now.

So my plan is.
1)Ring them to ask about waiting nearly a month for the injections if it gets worse in the meantime, as this all happened so suddenly. (eg they were told by one consultant to monitor every 8 weeks, but decided to go for every six months or I could have been seen a month ago)

2)See if its possible to correct the information on my GP notes, there is a confusion of diagnosis,

3) Try a Libre 2 monitor. I can't afford to do this for long tho but it will keep a closer eye on blood sugars.
I more than halved my H reading since diagnosis 18 months ago to pre diabetes level... but blood sugar is a yo yo, sometimes dipping below 5 or waking up over 7. This morning it was 9. For the last two months I've been doing finger prick monitor 3-4 times a day.
4) Up the exercise whenever it seems higher. However, its difficult to do this immediately first thing, so its hard to get the count down when I'm awake at 7.am.
5) I've already done everything I can to change diet but maybe there's still some tweaks I can make.

Any other ideas welcome. Its been helpful writing this all down. Thankyou.

From my experience it can be halted & reversed.
BG management is key.
10 years ago I was needing to use “accessibility” on my devices even with corrective vision. When it was first diagnosed. Not any more.

To be honest, I never heard of the eye condition untill it was pinned on me, either..

Do you say you have a 3 weeks to a month wait for your first injection?

 

[Treebo]

Hi Jaylee, Thank you so much for replying. I am so glad you feel recovered.

Injections are A three week wait.

There is such a confusion about my diagnosis from various different doctors that I am not sure what I've got or how to report it to DVLA. The thought of not being able to drive and losing my independence was so concerning.
When I go for the injections (which have a clear diagnosis for) I will see a nurse clinician and from experience I don't think they will have time to go through my notes or advise about driving. I think it will just be the injection and out asap.
I did ring the Macula Association who were very kind and helpful and will ring the Eye Hospital on Monday to see if there are any cancellations and double check as the vision has got slightly worse in one eye. This is something I've been told to report. MA said that was the best course of action.
I can recommend anyone in same situation to ring them.

Re control your blood glucose, I am trying to, but wondering if they mean avoid any spike at all costs (and how bad any spike is) or if they mean control your H reading in general over time. I've got a freestyle libre device trial and can monitor it much better now.

 

[Jaylee]

Hi Jaylee, Thank you so much for replying. I am so glad you feel recovered.

Injections are A three week wait.

There is such a confusion about my diagnosis from various different doctors that I am not sure what I've got or how to report it to DVLA. The thought of not being able to drive and losing my independence was so concerning.
When I go for the injections (which have a clear diagnosis for) I will see a nurse clinician and from experience I don't think they will have time to go through my notes or advise about driving. I think it will just be the injection and out asap.
I did ring the Macula Association who were very kind and helpful and will ring the Eye Hospital on Monday to see if there are any cancellations and double check as the vision has got slightly worse in one eye. This is something I've been told to report. MA said that was the best course of action.
I can recommend anyone in same situation to ring them.

Re control your blood glucose, I am trying to, but wondering if they mean avoid any spike at all costs (and how bad any spike is) or if they mean control your H reading in general over time. I've got a freestyle libre device trial and can monitor it much better now.

Hi,

A 3 week wait isn’t too bad.

Don’t drive to the appointment, they will probably ask how your getting home?
Could be a 3 hours before the local anaesthetic & then the anti VEGF injection clouding wears off?
I suppose you could get someone to drive you home immediately after.

BG levels. I just try to keep mine in range thus lowering HbA1c? Not always easy…

DVLA. On informing them on my condition, I was required to do a “vision field test.”
I still hold a valid licence.

Best wishes.
Let us know how you get on…

 

[Treebo]

Thanks. Sorry for delay in reply. I lost my log in deets again!

Had the injection about 2 weeks ago ( was lucky to get a lift there and back.)

If anyone else is having this proceedure just to let you know it was less painful than a dental injection..
Hardly felt it at all and the nurse clinician who performed it was excellent and very reassuring So it all went well.
Felt a bit sore for that evening but they gave me some gel to use, which really helped.

Noticed a bit of an improvement since but not a total reversal.. but definitely felt better less headachy and at least it had stopped getting worse, previously I was at the stage of seeing things distorted and twisted and grey on the left hand side with that eye, faces had started looking a bit like zombies so I was really glad to have the procedure.
Two more injections to go and I'm quite glad about it.

Re driving. I want to get a proper written diagnosis as its so confusing having seen so many different people, before I report it to DVLA. Until its reported I'm not insured if I have an accident, so it's safer not to drive. Also. I'm not sure if once it goes on your record, if it stays there, even if you have treatment and it improves..

Re Blood Glucose control. I've got a CGM device now... I think its the only way to keep track. My blood Sug is all over the place, even though the HB1cA was 45 in March ( down from original 98 at diagnosis) . For eg... during sleep its gone down to 3.4 and risen to 8.00 plus on waking.. I avoided breakfast, until about 11 and then, with a small bowl of no sugar museli with almond milk ( and after taking Metformin tablet) it shot up to over 13.
The best way to get it down again is walking/moving - nothing else works really.
According to the monitor, I'm in the correct zone for 80 per cent of the time.
I've no idea if this is enough. But I'm sure the spikes don't help. If I didn't have the CGM device I wouldn't even know about these spikes, even with strip testing 3 times a day.

The eye consultants don't really seem to be able to define what they mean by controlling blood sugar and say ask the gp ( which I'm going to do) I'm assuming it means keeping it between 5 and 7... but I can't do much about the ups and downs whilst I'm asleep. But will keep trying to find out how they suggest dealing with this and report back.

 

[MrsA2]

a small bowl of no sugar museli

Check the carbs on the packet. Even " no sugar" muesli is carb heavy because of the grains. Compare the carbs with a sugary muesli and they're not very different!
Eggs, or plain yoghurt with seeds or nuts might well give you a better result.

 

[Melgar]

@Treebo, I'm not wishing to derail the thread so just a very quick note on that 3.4 reading on your cgm ( I see you are on meds). cgm device accuracy can be iffy once they drop down to those low numbers. Likely your blood sugars were higher. When my blood sugars drop below 3.5 I just do a quick finger prick to make sure. I have a history of hypos.