Scared

Status
Not open for further replies.
M

Mike P

Active Member
Relationship to Diabetes
Type 2
I thought things were going well. Just got my results back from my third eye screening. Previous two were background retinopathy, however this one has come back as Diabetic maculopathy which has me a little scared exactly what this all means. Looking it up has just made it all the more scary!

Mike
 
Mike P said:
I thought things were going well. Just got my results back from my third eye screening. Previous two were background retinopathy, however this one has come back as Diabetic maculopathy which has me a little scared exactly what this all means. Looking it up has just made it all the more scary!

Mike
Click to expand...
Have they given you an appointment to be seen at an eye clinic?
 
grovesy said:
Have they given you an appointment to be seen at an eye clinic?
Click to expand...
No appointment yet just advice that I will need to go to on the 'surveillance screening pathway' whatever that is and will have an appointment sometime in April in the surveillance clinic.
 
That sounds like you are being put in the system. I am sure some of our members who had treatment for this will be along at some point. Good luck.
 
Hi Mike. Sorry to hear you have maculopathy. At least it has been picked up and it can be checked again in April to determine the best treatment for it. The Internet can be mind-boggling with the information about eye conditions. I have found for me, the Eye Clinic nurses have helped me understand particular eye conditions, treatment etc eg laser treatment for diabetic retinopathy, which has been very successful. I now also ask my consultant more questions until I fully understand something! Wishing you all the best.
 
Hi. Just had the same letter from my screening. My understanding is that it is just a bit of bleeding on the retina but in the macula area so a little bit more important to monitor. Might just be monitored (it can be sorted by the body sometimes) might be a bit of laser (I had about a minute of laser 15 years ago) or you might get injection into the eye which sounds scary but I know people who have had it done and say no problem.

I have been put on a list. They have reviewed my photos and said not urgent so will get round to me in about 6 months time and to contact them if I get any problems. Catching up with covid delays.

So don't worry. My 'you don't need appointment letter' came about two weeks after the 'you will get an appointment' letter which arrived 2 weeks after the 'result' letter.

Keep a lookout for those and give them a prod if you get problems or you don't get the follow up letters.
 
Mike P said:
I thought things were going well. Just got my results back from my third eye screening. Previous two were background retinopathy, however this one has come back as Diabetic maculopathy which has me a little scared exactly what this all means. Looking it up has just made it all the more scary!

Mike
Click to expand...
Hi Mike, sorry to hear about your results.

Yes, I find Dr Google has me more terrified about an issue that I need to be! We've got a wealth of info on our site so please do feel free to have a look around: https://www.diabetes.org.uk/search?...c.tab=0&gsc.q=Diabetic maculopathy&gsc.page=1

The best person to speak with though would be your Health Care Professional so that you can get info specific to you. Hopefully they will follow up soon and put your mind at ease but in the mean time, we're here to support you through this.
 
I had the ‘you have’ letter.....about 3 years ago after the normally yearly screen. I was called to be seen at area surveillance clinic 6 months later as they have better gizmos then was called back every 6 months up until last July. So monitored for best part 3 years.

I was told I needed to see consultant - and would get appointment “soon”. Worrying at the time especially when I was told in December when I rang to ask if I’d still have the usual 6 month check as I hadn’t heard and it was 6 months despite waiting to see consultant I didn’t want to fall out of the system.
I was told there was about a 45 week wait (yep I get that’s pandemic not a problem) to see consultant.

Anyway the next morning someone rang and said I’d been reviewed again and was seeing consultant straight after Christmas. I did and had my 1st injection there and then. It was ok a little sore and watery for a good few hours. I have the 2nd of the initial 3 injections next week.

It really didn’t hurt as such. All quite quick. Funny bit was they numbed eye and were just about to do it when I put my hand up towards eye to poke it to check it was numb obviously they’d just sterilised all around it so there was a lot of hand grabbing and holding to stop me touching !
I imagine you’ll be monitored for a while. Try not to worry.
 
So sorry to hear about your diagnosis with maculopathy @Mike P :(

Hope the screening pathway flows easily for you, and that you get an appointment through promptly - hopefully sooner than April!
 
Quick update. Went for my scan on Thursday. The scanner operator was very nice and talked me through it all. I was shown the area of concern on the digital photographs and also on the scan and could see on the scan the bulge formed by the blood vessel leak in my right eye. The left one is fine.
I have now been referred to the hospital eye centre for review and possible treatment, a non urgent referral so could be some time away. I understand that the condition will often resolve itsself so have to be very good keeping my BG under control and keep my fingers crossed.
I will keep you all posted.
Mike
 
I still been having regular scans throughout covid. I have had laser treatment on both eyes due to some small bleeds was told by consultant that these can be quite common even without diabetes but at least it will be treated. Found have treatment fine, worse part was having drips in to dilate which you have for scans anyway.
 
Thanks for the update @Mike P

Glad to hear the screening came through and you’ve got things checked out. And reassuring that yours is a non-urgent referral, which suggests they are quite relaxed about things.

Hope your BGs play fair, and that your BP stays in a good place.
 
I have had treatment for this very recently, and previous treatment for some bleeding in the outer areas of my eyes.

My hba1c for the past 15 years has been steadily coming down from double figures to my most recent of 7. In that time I've had 3 laser treatments and only the latest was due to the macular bleeds.

It can be very scary and I remember thinking at some point I would end up blind. All these years later my vision is still fine though, despite a few abnormalities (like blotches of colour, or a few strange floaters that I barely notice.)

I would advise when you do see a specialist to ask as many questions as you can. Tell them you are nervous and how you feel- they deal with people scared about this on a daily basis. My experience there has been that they are very, very supportive, friendly and very good at what they do. Many times I've been to the opticians they have remarked on how clean and well done my laser has been.

However, I need to add that I have gone many, many years with stable retinopathy many years before treatment was even required (including macular) It's hard but I would try not to worry about it, there is a lot of funding, research and time spent on this very cause. I regret the many years I spent worrying where I could have just focused on improving my actual diabetes.

I'm not really into the science of it but if you have any questions I'd be happy to help.
 
Last edited:
Hi Mike - just a quickie to say I had this letter about 4 years ago. I went on a 3 month scanning cycle and it was gone within 6 months. It has reappeared once since then and then disappeared again.

The letter had an awful impact on me; when I felt brave enough, I spoke to the screening service and they promptly changed the letter. Good luck and keep talking
 
Further update, have had appointment through for eye screening at local hospital on June 7th, quicker than I had expected. From the letter it seems that they are going to photograph the eyes again to be reviewed by a "specialist retinal grader" with results to be given within 6 weeks.
 
Reading these posts makes me appreciate how amazing our NHS is. I know there are some shortcomings but imagine living in a country where they don’t have any health service !
 
I also had this and was put on the surveillance pathway about 2 years ago. I had screening every 3 months for the last couple of years and at the last one in January, delighted to say the maculopathy has resolved itself with no treatment other than stellar control! So although scary, focus on getting your levels under control (which I'm sure you're doing anyway!) and there's a good chance it will sort itself out 🙂 as well as the numbers in my signature, my hba1c has been rock steady at 42 since Dec 2019. It's hard, but definitely doable - good luck!
 
I attended my hospital appointment last week and was greeted by a brilliant technician who said that the main part of his job was to try to put my mind at rest. After the eye drops he took 40 photographs and scans taken of my eyes that are currently being analysed. The technician was great and said that my maculopathy is background and it would have been a 50 / 50 call as to whether I should have been referred to the hospital. He said not to panic as it was only minor and now I was under their care they would take good care of me and, depending on the results of the analysis, would probably scan them again later in the year. I was advised to keep blood pressure and blood glucose under control and it could well heal its self, no need for treatment at the moment. I must admit he was great and I left the appointment feeling very positive about the situation.
 
Result! Had the letter from the hospital today, only taken a month to arrive. Their diagnosis for both eyes is M1 (DMO) Maculopathy with macular oedema, not clinically significant. Clinic outcome - Discharged to Diabetic eye screening programme for routine monitoring.
What a relief, been sort of worrying about the possible outcome and delighted with the result. Just have to work on keeping the BG under control and hope it all clears up.
 
I've just received a letter from eye screening stating diabetic maculopathy. How are you getting on with yours? I have to go back in 6months to screening.
 
Status
Not open for further replies.
Back
Top