early maculopathy...

[Vix]

the moment I have been dreading... my eyes getting worse and affecting my sight I knew I had background retinopathy which has been monitored with checks every 6 months, and doesn't seem to have got much worse over the last 3 years and because it was at the outside of my eye it never seemed to cause any problems with sight. But, a couple of weeks ago I woke up and my left eye had a blurry spot in the centre of my vision, I panicked as I'm in my second trimester and had been warned by my DSN that my retinopathy could dramatically get worse during pregnancy... went to the optician and she said she saw signs of early maculopathy near the centre of my eye I was so upset and disappointed as my levels have been the best they have ever been (still a bit of a yo yo but my hba1c has never been as low as 6.3 in 19 years) but then after a week of trying to get an emergency appt with an eye specialist my DSN managed to persuade someone at the hospital to see me and he said that yes I do have some spots near the centre of my eye which isn't good, but he thinks that the blurring, which has a strange texture to it, is actually caused by the jelly detaching from the back of my eye and there's nothing they can do. Apparently it usually happens in 50/60 year olds so goodness knows why it's happened to me... but has anyone else ever had a similar problem? I'm a bit scared as I still 4 months of pregnancy left and I don't want to it get even worse over that time as it seems to be worse today for some reason

xx

 

[HERE TINTIN]

Is it the vitreous jelly behind your eye ? I had to have 5 vitrectomy's which is where they operate to remove the vitreous jelly. I had retinopathy and had a lot of bleeds and after major laser treatment then had the vitrectomy's. Sorry if this is nothing like what is happening to you, but when you mentioned jelly I thought it might be the same.

 

[PattiEvans]

I don't know if it's the same thing at all, but I had a scare last year where my jelly started to pull at the retina and I saw the specialist at the eye casualty department of my local hosp. He told me to drink lots of water and keep hydrated. At an appointment two weeks later (by which time I was awash) all had corrected itself.

 

[Vix]

I'm not entirely sure TinTin, he seemed very blasé about the whole thing and just said it was the jelly at the back of my eye detaching itself and it was tough basically! What annoys me is that when he spoke about the maculopathy he said they wouldn't do anything unless it got much worse, but surely it's better to prevent it getting worse before that stage??? Did the vitrectomys help? It sounded like the jelly was detaching from the back of my eye and once it had detached there was nothing I could do, but like I say he didn't seem too bothered about my panic and just said I need to go back in 3 months. I thought the whole point of catching these things early was to try and stop it getting worse. Has your retinopathy/vitreous jelly caused permanent sight problems after your ops?

Oh, that sounds promising Pattidevans... I've had this 2 weeks now and it seems to be the same most of the time but worse today... having said that I know I haven't drunk enough today so maybe being dehydrated makes it worse! I will definitely try drinking more water as it's got to be worth a go hey

xx

 

[HERE TINTIN]

I also have early maculopathy (am 48) and I have been told I also have to wait until it gets much worse before it will be treated. I lost most of my sight through diabetic retinopathy (please remember yours is very early,mine was not caught in time) but the vitrectomy did save what little sight I have left. But I am not at all sure yours is the same at all as I said mine came from severe retinopathy.

 

[Duffy1986]

Hi vix I had to rep,y as I have recently had baby (well he's 8 months now) and had a terrible time during pregnancy and then after with my eyes. I have absolutely no idea about your exact situation so don't be alarmed but what happened to me was I conceived at a high hba1c so rapidly brought down sugars which accelerated my background retinopathy to moderate. Then I had something called macular oedma (fluid in the eye) which made it very difficult to see. They monitored both the retinopathy and the oedma but didn't laser or anything just monitored. Then I had lots of other medical issues just before birth and was very sick. Unfortunately the sickness accelerated the retinopathy and caused huge bleeds. The bleeds were bad and unfortunately new vessels started to grow and tug at the vitreous jelly at the back of my eye. It pulled and pulled and distorted the vision until I could no longer see anything but cloudy white in my left eye. I then ad a vitrectomy, lots of laser and after a long waiting time I can see. I have recently started to drive again!

I was monitored every 2 weeks during my pregnancy due to my personal situation. I am an expert in my own eye stuff but I'm certainly not in yours and I'm sure you will be ok however I really don't think it's right that you see someone in three months, its too long. Pregnancy seems to speed anything up. I encountered some awful eye doctors but luckily some great ones too. You need to see an ophthamologist who specialises in this. Where abouts do you live?

I found that the doctors see these situations every day so don't realise how alarming and worrying it is for people having vision changes, my husband did a lot of pushing and phoning daily etc to make sure I was seen - even if it was just to know that things hadn't got any worse.

If you want to chat I'm happy to give you my email x

 

[HERE TINTIN]

I just wanted to back Duffy up, my eye problems were also associated with my pregnancy and you should be seen quite quicl;y , eyes are urgent and should always be treated as so. My retinopathy deteriated at an amazing rate and became very serious. Thats not to alarm you but better safe than sorry