Diabetic Macular Edema

[Gemini55]

I started having eye problems and told my doctor who just said it was my age! I knew it was happening too quickly and went to see an optician who gave me a digital retinal scan and told me I have Macular Edema and referred me to hospital in December. I finally saw the specialist mid March and he was initially unhelpful and told me to come back for a digital scan in 6 weeks. I said the optician already did that and he said, we do our own and make our own diagnosis. Anyway, it seemed to be rapidly worsening so I rang and was given an emergency appointment and when the specialist saw me he said "I told you I would see you in 6 weeks" so I said I know but I can't see. He said "We know you can't see". I said Look, since I last saw you I can't even see using a magnifying glass! He had the assistant do a digital scan and said there was a lot of fluid in both eyes and he would start treatment straight away, I had an injection in both eyes. I've since had two more, but I'm getting increasingly agitated (I'm a wimp) about having more. Is there no alternative treatment?

[Shimano]

Dear Gemini, my heart goes out to you. In addition to the fear of losing eyesight, being constantly fobbed off when you know something is wrong is just the worst. Not having a relationship where a listening ear is available makes the experience of dealing with sight loss very frightening. The macular society provide a telephone counselling service, which I found to be very helpful when I was first diagnosed. I recommend it though sometimes it is hard to get through to. And you are not a wimp. Being spoken to in such a dismissive way is definitely Not ok. This bloke sounds as though he needs a lesson in listening and communicTion skills as well as a clip round the ear. Also, injections can be very painful and frightening as I well know. Very best of luck. Hang on in there.

[Hidden]

Hi gemini55, sending you a hug x

Sight problems are known to be akin to bereavement emotionally so be kind to yourself. The Macular society website and helpline is very good, they also have FB groups that meet up (obv not now).

It sounds like you've had the loading dose (3 inj) so hopefully your oedema will improve and you can go longer before needing another injection.

An important thing is to be clear exactly what you have as that can determine treatment options and also if any underlying condition needs to be better managed. You don't have to be diabetic to get macular oedema. If you are diabetic then hopefully you are also under a clinic for sorting that? Which should help.

Well done for pushing to be seen. Unfortunately we often have to insist something is wrong before they agree! At least they know now that you dont make a fuss about nothing.

I would expect you to have a review appt before too long (under current crisis it may be cancelled though) - that's the place to ask about prognosis and treatment options. Not all treatments are available/ work for all conditions and not every eye is suitable for them anyway, it all depends on the exact whereabouts of the problem ( eg I cant have laser as it would cause more damage than the condition I have because of where in the eye it is).

If you haven't already, print an Amsler grid off the internet, mark in pencil on it any wavy lines and check once a week for any change. That will either show you improvement, no change, or worsening in which case definitely ring your clinic again.

Best wishes going forwards.

[RP1944]

Unfortunately at the moment there is no other treatment so we have to get

Injection in the eye. Hopefully one day they will find more pleasant treatment.

I’m sorry you had such a difficult time getting treatment, lucky you are the type

Of person who perseveres. Best wishes to you.x

[fed13]

One is tempted to make a formal complaint about this Doctor's attitude! It is extremely unpleasant when you come up against "Dr. knows best and you can shut up"!.

A patients experience is so important. They know their own bodies! I worked in the Professions Supplement to Medicine, in the NHS; and whilst 99% of medical staff were really supportive, I met some real horrors both when I was working and as a patient. So my heart goes out to you Gemini55; and I admire how you hung in there and stood your ground. What an unpleasant experience!!

Injections can be very scary, but I have found apart from a moment of pressure, the actual injection does not hurt. I and many others have found iodine can provoke the eye. After a bit of a battle I got the fact through that I suffered severe post injection pain due to iodine, and the team now omit the pre-injection drop whilst I wait for my injection, and only use 1/2 strength and give me a thorough wash out.

I hope all will now go well Gemini55. keep us informed of your progress!xxx

[Shimano in reply to fed13]

Hi fed13, I have heard others say the Injection is just a moment of pressure but I have severe pain when the needle goes in. I have had two cataracts removed. I dreaded the first one three years ago but was amazed that all I felt was pressure. I sailed up to the second one last year without the slightest anxiety. It hurt like hell and still gets sore and red. SAme surgeon each time so can’t understand the difference except being a couple of years older. Any suggestions anyone?

[springcross in reply to Shimano]

Could it be that you need extra anaesthetic drops now?

[Shimano in reply to springcross]

They tried that but it just makes after effects worse as it dries out the eye even more so I can’t blink without severe pain. Thanks though.

[springcross in reply to Shimano]

That's a shame - what an absolute nightmare!

[Shimano in reply to springcross]

Yes, it is! Will just have to bear it. But can’t manage to grin.

[tallyho]

Hi there. I am interested what country you are in.

I have DMO dx in 2011. I have had monthly injections since then. There is laser but If the oedema is too near the fovea ( the bit we use for sharp central vision) then laser cannot be used. Can you get hold of any local eye sight loss charity’s near you? With your diabetic control try and keep your levels stable and your blood pressure the best it can be. Take care and please let us know how you get on.

[Sijslws]

Hi Gemini55

I can very much understand the frustration you have been through. I initially went through a period at my Eye Unit where they did not want to do anything other than tell my Doctor that it was down to my diabetes or high blood pressure and for my GP to address those issues. There was a bit of coming and going with the GP stating that there was no problem with my blood pressure and they were satisfied with my diabetes control. Eventually Lucentis were started but even now every time I see the Doctor at the Eye Unit they will ask me how my diabetes control is in a rather accusatory tone with the implication that it is my fault that they are having to give further injections. As to there being an alternative to injections I am not aware of one but see references to research work that may throw up an alternative at some stage.

Alun

[springcross]

Hi Gemini55. Unfortunately, at this moment in time, I don't believe there is an alternative. . In time maybe but I remember seeing a few weeks ago someone asking the same thing but the answer was no, not yet. The Macular Society could possibly give you the latest info if you contact them. I have to say about your experience, I think your specialist is nothing short of a Bully (with a capital B). I am so glad that you went back at him and got the treatment you obviously needed. Let's hope that you don't get a repeat of that attitude next time you go. All the best to you.

[JJnan]

How awful for you being treated as you have , well done standing your ground to 👏👏👏 .....none of us like the injections but no alternative at the moment and your not a wimp, wishing you good luck x

[Catseyes235]

I do hope you make a thing of pointing out to your doctor how dismissive he was so doesnt treat other patients the same way. Same goes for hospital doc too. I don’t think we complain enough about these dismissive attitudes and not everyone has the strength as you did to fight their corner. Well done for pushing for treatment.

Regards injections do make sure you have a new sterile bottle of eye drops with hypomellose for every time you have treatment. The more relaxed you can be the better and after 3 years of injections and now getting both eyes injected I can say I’ve only had one bad experience. My worst worry was going for injections during lockdown but all was fine. Good luck with everything!

[Gemini55]

Thank you everyone, I feel much better knowing that there are others who are dealing with the same kind of issues. There is a tendency when in a new and scary situation that you feel so alone. I don't feel comfortable with the specialist I see but that is due to him being quite condescending, however, I keep reminding myself that if it retains what eyesight I still have it is worthwhile. I fell off my treadmill lol, and I'm having surgery on my elbow on Thursday so I'm currently feeling very sorry for myself, I wanted something to take my mind off my eyes, but I had something more positive in mind haha.

Tallyho, I'm in New Zealand

[Rosalyn-helpline Partner]

Dear Gemini55,

I am copying a link to our booklet on Diabetic Macular Oedema (DMO):

macularsociety.org/sites/de...

In terms of the pain you are experiencing during injections, I am copying a link to our related factsheet:

macularsociety.org/sites/de...

It would be worth contacting your ophthalmologist via their secretary in advance of your next injection and using this as a discussion point. If they can identify the cause of the pain, then then can try and implement measures to guard against it happening again.

In addition, we do have a free telephone counselling service:

macularsociety.org/counselling

Kind regards,

[Yeso]

Hi Gemini, yes I understand how you feel about the injections, and as far as I know there is no other treatment, I have had about seven injections and I will have tests and eye scan in a few weeks to see if the treatment is working, I can see some improvement thank God, I take a Valium an hour before injections and it helps ! I noticed at first visit most patients asked for a Valium, so I was very nervous and asked for one.. I hope your eyes improve, best wishes x