• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Eyes - Really terrified

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
L

LadyLuck

New Member
Relationship to Diabetes
Type 1
Hi there,

Only recently joined this forum but have been viewing all your posts for a while.

At the beginning of January I went for my yearly eye screening and have had a letter to say I need to go as they have found something in my right eye. Now I have already had laser (the scatter kind) and I know that I have maculopathy in my right eye and its been there for about 4-5 years with no action needed.

I am so upset, it's been 3 years since i've needed any treatment and now its happening all over again.

I just feel like I can't look forward to anything as this is always in the back of my mind. I would probably loose my job if I couldn't drive which would mean I wouldn't be able to pay my mortage and loose my house, I'm too scared to have children in case my eyes get worse and I can't look after them.

Long and short of it is i'm worried sick and feel like crying all the time.

Sorry for moaning on just wanted to say hi to everyone and see if anyone has been in a similar position.
 
Hi Lady Luck, welcome to the forum 🙂 I am very sorry to hear this, but try not to let your imagination run wild, it won't achieve anything other than making you feel bad. That's very easy for me to say, I know, but do try and stop yourself and distract your self with something else the moment you start worrying about it. Do you have an appointment yet? I had similar emotions a couple of years ago when I was referred to the Eye Hospital after previously having little or nothing reported from previous scans. As it turned out, I didn't need any treatment, but just more close observation as I had changes near the macula. After a couple of years they have decided that nothing is getting any worse so I am back on annual screening.

I hope that it is similar for you - that they have spotted something, but just need to observe it more closely in order to be on the safe side. I know several of our members have had quite extensive treatment but are still able to drive - hopefully they will be along to reassure you 🙂
 
Thanks for your reply, it means alot to be able to talk to others who have been through similar.

In one way I am hope that it is the Maculopathy that has already been there for 5 years and that nothing has changed with it, if its something new i'll have a new nightmare on my hands.
 
Hi Lady Luck. I hope that you find that it isn't another new change. If it is you will find the strength to deal with it. If there is a further problem that affects your ability to do your job or get to work please contact Access to Work. They were brilliant when I had my retinal vein occlusion.
 
Hi there, and welcome tot he forum.

Hopefully it is what has been there for some time and they are just doing some follow up checks to make sure everything is Ok. The main thing is you have been checked and in a worst case scenario whatever it is has been picked up early and if necessary can be treated.

These things are a worry and sometimes our imaginations run away with us, especially if there has been a problem there before. It is very likely everything is OK and it is more for reassurance than anything else.
 
LL,

i echo all the above comments - hard not to, but try to not worry about it too much. After all, you don't know what it is they've spotted yet.

I went to an annual screening a few years ago and was terrified when they said I had to get referred as they'd seen something on the results. When I got to the clinic, the consultant took one look at the pictures and said that the 'thing' that had been spotted was reflection from the light that had ended up on the retinal photos!

So, try and stay positive.
 
Thanks everyone for your kind messages, i'm there next wednesday so I will report back with my results and in the meantime do a hell of a lot of praying!!!

I've been reading up about the injections for maculopathy but i'm not sure if they give them on the NHS. As anyone on here had them and do they do any good? Also doe the laser for Maculopathy do any damage to your vision?
 
LadyLuck said:
Thanks everyone for your kind messages, i'm there next wednesday so I will report back with my results and in the meantime do a hell of a lot of praying!!!

I've been reading up about the injections for maculopathy but i'm not sure if they give them on the NHS. As anyone on here had them and do they do any good? Also doe the laser for Maculopathy do any damage to your vision?
Click to expand...

Do you mean Lucentis? It's just been approved by NICE 🙂
 
Well - the consultant you see next week will know the answers to those questions, won't he?

I was told I have 'the start of' cataracts and of course I instantly panicked inside. And I still keep imagining they are already visible, cos that's exactly what you do. But they aren't, neither do they affect my vision whatsoever.

In the interim I happened to meet one of the Clinical Optometrists at our hospital - he's the brother of my Pharmacist and it was quite by chance and I cross examined the poor bloke. Apparently it could be another 20 years before I notice a difference. Or it might be 2.

He said nobody knows or can predict - so there's nowt whatever to be gained by stressing, is there?

Just do your best with your BG control - and your BP! - and that's all you can do to help.

Plus why don't you talk to the pre-conception clinic about the wisdom or otherwise of a preg? You could actually do a lot worse than ask yer man at the eye clinic whilst you have him trapped !

Good luck.
 
To some extent we all fear the unknown. It is nice to have somewhere we can get reassurance and support and this forum is a big help.
 
I will ask that question when I go next week. My problem is that i'm one of those people that look 10 years into the future and think of every worst possible disaster :confused:

Thanks for all your replys, I will try to calm down i promise....
 
Hi LadyLuck. I genuinely know how you feel although I've "only" got background retinopathy I also have chronic macula odema in my left eye caused by a retinal vein occlusion and closed angle glaucoma with the optic nerve in my right eye becoming more damaged which may mean even more surgery. I can't read with my left eye and there is a relatively high chance that the retinal vein occlusion could happen in my right eye. Plus there is a high chance that I will need further glaucoma surgery possibly this year and my consultant has said that this could lead to sight loss. I get extremely stressed when I have eye appointments and even ruined one of my oh's birthdays because it clashed with when I was having a scan of my optic nerve BUT these things seem scarier than they are. I am 44 and have a great quality of life. I am studying and doing things that I want to do. As others have said the fear is the worse thing. I've adapted to my eye damage and enjoy the great quality of life that I have. I am truly thinking of you because I know how scary it is but whatever the outcome you will deal with it and life will become good again.
 
I get so anxious weeks before any appointment, i suppose its because you can't always tell when there's something wrong as there's no pain.

The last bleed I had was in August when we went on holiday and it happened as soon as we got there, it hasn't fully cleared but is more of a faint shadow now. I haven't had any since and I haven't had any bleeds at all in my right eye (the eye there saying has vessels).

One of the problems I had was the hospital I went to for the laser was awful, they didn't talk to you let alone explain what was going on and the last time I went they said "yeah you need more laser", I said I wanted a second opinion. I was then referred to a different hospital (this was approx 2 years ago) and they have never given me laser. They actually talk to me and tell me whats going on.

It was the old hospital that did the retinal screening, and rang me to tell me they have discovered something (hence my worry). I have made an appointment with my current hospital as I refuse to go back there!
 
Sorry Caroline, I never replied to your message, I find walking helps me relax so I may drag the OH out when I get home tonight for a stroll and then a lovely bath , that should help me calm down 🙂
 
sounds like a good way of winding down and relaxing, hope you enjoy it
 
Well i have been to see the eye consultant today and right on queue i had a bleed my first since mid last year! she had a look and basically gave the option of the operation where they drain the fluid out of your eye, she also mentioned the injections were an option as i also have swelling in the centre of my macula (i think thats right) but at the end she said to moniter the bleeds and not to worry as my eyes aren't in that bad state and actually are quite good.

So at the end of everything i don't really know what to think. i have started on statins as my total was just over 5 so whether that will help my eye situation i have no idea. I have good control now so theres not much else i can do.

Next appointment 3 months so hopefully there will be no change.
 
sounds like you have one or two things to think about but it is not too serious. See how things are in 3 months. The good thing is you are being checked and your eyes are good in other respects which is hopefull.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top