Retinopathy rears it's ugly head

[BabyBelle]

Not had the greatest of weeks.

I have retinopathy and had a fair amount of laser, in both eyes, done about 18 months ago. It was done under general as the consultant tried to do it over a few sessions but I found it extremely painful. It's been stable since and though we knew the risk of progression in pregnancy my consultant was happy that if we were going to try, with it stable, now was the best time, with the lowest risk.
They've been monitoring me at the eye clinic every 4 weeks and all was looking ok. Until last Tuesday... I'm now 26 weeks, and Hba1c has been between 5.8 and 6.2% since pre-conception but it seems the vessel growth is back and pretty prolific so some more laser is required.

Doing it under general like last time isn't an option but neither was waiting until after delivery so I had to grit my teeth and take 40 mins of grief on the right eye straight away on Tuesday, and I've got to go back for the same on the left eye next week.

Just to make a drama into a crisis (as I do!) I also passed out just as he was finishing! Consultant had to press the panic button to call a nurse/oxygen etc so my poor hubby was sat outside with alarms and flashing lights going, nurses running from all directions, not knowing what the hell was happening to me! I was fine really - just a bit stressed by it all so went light headed. They checked my BP which was apparently a bit low. I had managed to get myself on the floor so didn't fall or anything and I was only out for a few seconds.

Anyhoo.... thing is, I'm now wondering what this means for the next stages... has anyone had experience of laser during pregnancy? Is one lot of treatment (per eye) likely to be enough so hold it at bay? Will it stablise again post preganacy? Does this now mean a c-section is a better option for delivery?
Is the answer to all these questions, "you'll have to wait and see"?

 

[Northerner]

Oh Babybelle, so sorry to hear this I can't answer your question I'm afraid, just wanted to offer you my sympathy and hope that things go OK with the other eye, and that you are fine after that.

 

[Twitchy]

Oh dear, not fun!! . My retinopathy kicked off after baby number 1, & I had laser during pregnancy with my 2nd & my goodness, it is stressful isn't it?! Both my babies were early; the first at 34w5d due to pre eclampsia & the 2nd at 35w4d due to my placenta failing... Both were C sections & honestly, it's nowhere near as bad as the push n' pop nct alpha mums would have you believe (no, I didn't get on well with them lol).

I do remember reading somewhere that the baby might have to be delivered early by c section if the retinopathy gets out of hand. If they suggest this please don't panic - although an early baby can be hard work (little tums = lots of feeds & their suckle reflex etc might not be too good) at the end of the day your sight is precious & you will want /need it for your kids for the long run, so on the balance of risks, an early baby might be necessary to preserve your sight. Mine are now 2 & 5, feisty, healthy & energetic & being early via C section does not seem to have caused probs! 🙂

Not sure if that answers any questions or not, but i can certainly shudder in sympathy - no one lkes the laser at the best of times let alone while pregnant! (((((hug!!)))))

 

[Twitchy]

Forgot to add things did calm down post pregnancy eventually, but after last time it will be no more babies for us, the risk to my sight is too great apparently & I have to think of the kids who need their mummy as functional as poss. To put that in context though, I've had t1 for 33 years now a lot of that time on 2 jabs a day (= less good control) so don't assume that will apply to you, I'm just getting tatty at the edges lol. X

 

[BabyBelle]

Thanks Twitchy.
I'm a bit tatty round the edges myself! T1 for 25 years and on MDI with HbA1c's mostly around 10 for 23 of those. Thank goodness for the pump or baby just wouldn't have been an option.

I'm not too worried about having a c-section - don't get me wrong, I do fully appreaciate that it's a serious op and not some kind of 'easy option'. Maybe because I've been surrounded by medical 'stuff' with the diabetes and have had some other surgery (shoulder op) done in the past, the medical side to it doesn't freak me out like it might a 'healthy' person that wasn't so used to it. Also the reality we all know, is that a high number of induced labours end up down the c-section route any way so I've kind of already prepared myself for that to happen.

On the other hand, I'm not too posh to push(!) but I am worried that I read the pressure from labour can cause hemorrhages on the retina if you have active retinopathy during pregnancy - so if they don't suggest a c-section how will it be monitored during labour? It could be too late afterwards!
I just want what ever is best for the baby but also for me and as you say, mummy without half decent eye sight isn't best for baby either.

The possibility of early does concern me a bit too of course. Though it will depend how early. If I (and baby) can hang in there till about week 35 or so, I think I'd be fairly confident that, while it would be tough, little one would make it and be ok. But another 9 weeks seems like an age away at the moment.

I'm answering my own question really - just got to wait and see - I'm just not a very patient patient! 😱

 

[Twitchy]

Bless you, it's no fun...I would suspect a c section is more than likely then...top tip time lol - you know those ghastly looking mesh disposable knicker the nct or jojomamanbebe etc sell? Post section you will LOVE them! Much comfier than the standard disposables or even normal knickers. 😛. Joys of diabetic motherhood, eh?! 🙄

 

[trophywench]

LOL I cannot speak for the Caesarian knickers but I do know someone with retinopathy which got worse during preg, who actually was induced and did it all herself, and yes her eyes did suffer but they waited after and some of it cleared up!

Additionally she got a pump when she was approx 30 wks, so she had mega better control (comparatively) thereafter, so it's all got to help!

 

[hyper-Suze]

Hi Babybelle,

I read your post with very much interest, and a tinge of scariness.

I am 12wk this week but I also had laser surgery abot 15months ago. My first trimester check up was a successful outcome but now I've read yours I'm not holding out much hope for my 2nd trimester check up! Eek!

Obviously I can't help with your queries but this maybe a pearl of wisdom for when you go back for your second eye next week....
You are allowed to take in someone with you to at least give you moral support and a hand to squeeze the hell out of! I had my partner there for one session and my mum for the other. They have to wear protective glasses but I found it an immense help.
(the other thing is I found being dosed up on painkillers(I had morphine based ones!) in advance to take the edge off but as its a bit iffy in pregnancy, as you say it maybe best to grit the old knashers!)

Good luck with the treatment next week and fingers crossed it stays stable for the rest of the pregnancy!

 

[BabyBelle]

Hey Suze,

Apologies, I didn't mean to scare you. A flare up of retinopathy is a risk in pregnancy, as I'm sure you know, but it's not inevitable.

I had the second round of zapping earlier this week, certainly not pleasant but not as bad as last time. My consultant is very nice and did ask a nurse to come in with us this time (the poor love did have to wear the awful looking protective specs too!) He also turned the fan on in the room and got me a glass of water before we started too (it's a very small and stuffy room). Afterwards he said he'd wanted to be absolutely sure there wasn't a repeat of last time... obviously for me, but also because he'd spent most of the rest of his last clinic having to convince all the patients that had been in the waiting area that it wasn't always that bad!!

He explained a bit more about what's going on in my eyes too and it's just growth of extra vessels, caused by the additional growth hormone that's surging about, - I say 'just', obviously that's not good but by lasering it now and restricting the growth early he's doing his best to prevent the hemorrhaging that does the real damage. He's fairly confident with what he's done that I won't need any more, at least until after the baby arrives, and is hopeful that then things should settle down again. He also said he'd spoken with my obstetrician and given that it is growth rather than bleeds and that the growth is being 'managed', while he would advise the baby is delivered 'promptly,' he doesn't think this needs to be earlier than the planned 38 weeks and doesn't think it necessitates a c-section either.

My advice, for what it's worth, is just make sure they keep a close eye on you - pardon the pun! - I've been seen monthly during the pregnancy and though being subjected to even more hospital appointments and the awful 'drops of doom' is a bit of a pain, it seems to me that close monitoring and getting in early with any treatment, horrid though it is, is the best option.

Will keep everything crossed for you that you escape the pesky vessel growing devils, as I say, it's not an inevitable part of diabetic pregnancy, just another thing to keep us on our toes and motivated to keep up the test, test, testing! 🙂