Macular something and a massive wobble!

[Tweety88]

This may or may not sound like a massive overreaction… but I had my eye clinic appointment last week and he said there was a small spot on the macular (I think). He said macular something, but I can’t remember what he said. He was very hard to understand, and didn’t really explain anything!

It’s really upset me as my control has always been fairly tight. I haven’t had a hba1c over 6.7 mmol in the last 7/8 years and haven’t had one over 7.5 in the 10 or so years before that.

I’m not saying I thought I’m invincible, but I just hoped id be problem free a lot longer. I’ve been diabetic 25 years, but I’m not ready to have further health problems yet!

When I say problem free, he wasn’t concerned and said to keep my control as is and eat plenty of green veg and he’d see me in a year?

I think I’m struggling because my mum is and always has been a badly controlled type one and has suffered many problems. Heart attacks, heart failure, stroke, kidney failure, eye problems.She had her first heart attack at 42, cardiac arrest when doing rehab from the heart attack, stroke at 62. I just don’t want that.

I’m trying so hard to keep myself healthy. I eat low carb-ish, I run 15-20km a week, I look after my blood sugars. I do need to lose weight, but it seems impossible for me to lose weight even with the exercise etc!!!!

I’m just scared. I’ve never ever had anything before at any of my appointments, I know what I’m doing with my diabetes and I try look after myself. I can’t do anymore.

Has anyone any experience with eye problems that could help/reassure me?

Am I worrying over nothing?

How do I stop things getting worse?

Should I just pick myself up and get over it?

Should I be thankful I’ve got 25 years since diagnosis with nothing else to worry about?

I’m just having a massive wobble and I don’t know where to turn!

I hope someone understands.

Thank you

 

[Jaylee]

Hi,

Yep, I had Macula oedema a few years back. Never even heard of it before. Always focussed on the fact I’d gotten away with retinopathy, regarding scans?
I had treatment for it. So far, so good. Promising results.

Hope this gives you some comfort.

 

[Tweety88]

Hi,

Yep, I had Macula oedema a few years back. Never even heard of it before. Always focussed on the fact I’d gotten away with retinopathy, regarding scans?
I had treatment for it. So far, so good. Promising results.

Hope this gives you some comfort.

Thank you for your reply.

How long between diagnosis and treatment? He said it’s a tiny spot (?) and he’s see me in a year? Should I push for treatment? What is the treatment?

 

[Jaylee]

Thank you for your reply.

How long between diagnosis and treatment? He said it’s a tiny spot (?) and he’s see me in a year? Should I push for treatment? What is the treatment?

Let me think now.. I’ve been T1 for 46 years. So I’d say I was diagnosed with it 5 years back??
They were all over me like a rash from diagnosis prior to the lockdowns.
It was some sort of fluid build up at the back of the eye distorting the central field of vision with me. (I was allowed to see the scans.) The treatment I had was a course of “anti-VEGF” injections.

 

[Tweety88]

Let me think now.. I’ve been T1 for 46 years. So I’d say I was diagnosed with it 5 years back??
They were all over me like a rash from diagnosis prior to the lockdowns.
It was some sort of fluid build up at the back of the eye distorting the central field of vision with me. (I was allowed to see the scans.) The treatment I had was a course of “anti-VEGF” injections.

Ahhh okay, see I haven’t got any vision problems at all with it. The letters on the last line of the chart were blurry, but just readable. Maybe if it causes me issues they will do something about it x x x

 

[Jaylee]

Ahhh okay, see I haven’t got any vision problems at all with it. The letters on the last line of the chart were blurry, but just readable. Maybe if it causes me issues they will do something about it x x x

To be fair, you were at a consultation & didn’t catch the “last name?” Quite understandable, Macular Jones? Mac Smith?
I kinda understand. “What is this…?!” I lost out on a job due to a basic number plate eye check in the work’s car park.
Went to the opticians, they wished my GP’s details & was referred to the ophthalmologist where the scans began..
With what I had. For a while I was never happy for a while prior with my prescription lenses.? Pinch & zoom & “accessibility” were used on devices..
It was a bit like a house of mirrors with the distortion. a “C” could morph onto an O possibly a G or maybe a Q? an N could be an H or is it a K.? That sort of thing.
The treatment was great. I can read the small print these days. I don’t think I will ever make a “fighter pilot” though.
But I have the privilege to drive.

Best wishes.

 

[Grant_Vicat]

Thank you for your reply.

How long between diagnosis and treatment? He said it’s a tiny spot (?) and he’s see me in a year? Should I push for treatment? What is the treatment?

From his reaction my feeling would be to keep up your excellent control, see if any change occurs or has occurred in a year, and then discuss treatment. If it's any cosolation next year will mark 40 years since my last laser treatment. The reading specs in my avatar are all I need! Best of luck!

 

[MrsA2]

@Tweety88 your diabetes control sounds amazing!
Just remember not everything is caused by diabetes. I have a congenital (born with it) eye problem that didn't manifest itself until I was 40 something, 20 years before diabetes reared its head. Your problem may not be related either.
Eye things tend to be very slow, both in the development and in the treatment, I'm still on drops 7 years after my last op, so don't waste your time and energy worrying and stressing, you'll wear yourself out unnecessarily!
My eye guy says best thing any of us can do is keep bg down, and you seem to have that nailed.

To put things into perspective, I can't read the second line either, but that's the second line from the top, not the bottom! Yet because it's just one eye I can still drive and do everything I used to. I never was a good typist!

 

[Dexta]

The very fact that he’d see you in a year will endorse his lack of concern.
Your concerns are understandable but I really wouldn’t worry.