vitrectomy during pregnancy,please help!!

[altec416]

Hi,
I am 14weeks pregnant with my first child, type 1 diabetic of 25years, on insulin pump for 6years approx. I have prolific diabetic retinopathy and am due to have a right eye vitrectomy next week.
I am overwhelmed and very scared about what lies ahead, particularly with the surgery and the posturing afterwards, ie face down, and then with the recovery.
I am unable to work due to being a teacher as they are worried stress could cause further bleeds in my good eye, which i have had already had at 11weeks, treated by laser.

Has anyone gone through a vitrectomy whilst pregnant, or just a vitrectomy in general wthout pregnancy.....pleaee any help, success stories or advice gratefully received!!!x

 

[himtoo]

hi there and welcome to the forum
I am tagging the lovely @Emilyprice who might be able to offer some advice with the eyes.
congrats on the pregnancy and there should be others along to support soon too.

 

[Emilyprice]

Thanks @himtoo, hi altec. Yes I went through very similar experience during my pregnancy 2 and a bit years ago.

For me, the macular edema progressed quickly and at around 5 months pregnancy I was signed off from work as I couldn't drive / see much. The retinopathy progressed too and bled at about 3/4 weeks post birth. I had a sort of black shower of blood in my vision.

I had a vitectomy too and honestly, it was fine, mainly because you don't really know whats going on! Afterwards my vision was very cloudy and I remember being panicked, but after about 10 days I could see much better (prior to the vitrectomy i couldn't see anything but whiteness in my left eye). It was a bit bumpy and patchy for a while, but it has 'flattened' out over time and I can drive, work etc now. Ironically that eye is probably my best one now, I've had other issues with the right!

Emotionally, I truly understand how traumatising and worrying this is, especially when pregnant. Try your best to be positive and to believe that everything will work out ok. I'm a teacher too and getting signed off was the best decision, having to adapt to seeing differently whilst being pregnant and the worry it creates meant I couldn't physically do both..If it starts to make work very difficult I would really recommend this. Also, it may be different depending on how they do the op but I didn't have to lie face down after the op at all, I think this is only if you have the gas bubble. They won't use the bubble unless they need to, especially with you being pregnant, but you will get through it if they do. How's your support network? I found having a really supportive family a real blessing, from running me to various eye apps to chasing docs and giving hugs couldn't have done it without them.

Sending a huge hug xx

 

[ljj1000]

Hi
I'm suffering with macular edema now with my first pregnancy. I have had laser in my left eye but the vision got worse with it. I'm now 23 weeks. Iv been off work since 19 weeks from it. I'm absolutely petrified I'm going to loose my vision. It's caused depression thay I havnt suffered with in years to come back and to the point iv been considering putting my baby up for adoption as I have no idea how I'm meant to look after a baby when I cannot see. I don't want to be a burden to my family. If u have and information on how macular edema progresses during pregnancy and after I would be really apreciate.

 

[azure]

Hi @ljj1000 Im so sorry you're feeling down. I can understand why you're worried, but bear in mind @Emilyprice 's story above. Have you spoken to your doctor, eye specialist and midwife about your worries and how you're feeling? They could help reassure you.

I've tagged Emily in my paragraph above because I'm hoping she'll see that and be able to reassure you.

I don't know much about macular oedema so I can't comment on that, but I can say that you sound a caring, thoughtful person and I'm sure you'd never be a burden to your family and that you'll be a great mum to your baby. Don't let the dark thoughts in your head at the moment persuade you otherwise.

{{hugs}}

 

[ljj1000]

Thank you for your kind words. I have spoken to my retinal specialist and in all fairness he is great. But not very reassuring but he did tell me that he can't be as he's legally not aloud to give me information that may sway my decission on having treatment or not. It just seems to be all the negative things that sticks in my mind. It had just been an emotional roller coaster from day one. The father if my baby left when I was 6 weeks, and it's been pains, scares amd eyes every week since. Hospital apointments 3 days a week. And just hearing this happens to others is reassuring that things will sort themselves out. None of my doctors or specialists have had much experience with my case so they can't tell me anything.

 

[Emilyprice]

Sorry about my absence @himtoo I've been moving house! Tjj1000 I just wanted to respond quickly as I feel like you are me 2 1/2 years ago! Really feel like you need a big hug and completely understand everything you are feeling! Like you, at around 20 weeks I noticed I couldn't make our faces properly and went to the eye doc and then life seemed to take a horrible turn. Initially it was the Mac edema that caused me the most probs, like you I couldn't work or drive so had to go on sick leave almost instantly (I'm a teacher so left without being able to explain anything to the children) I felt so guilty and so depressed, I then had probs with the retinopathy and had a vitrectomy in the end (all fine). I even developed a rare disease called addisons towards end of pregnancy and nearly died..just to top it off! I felt my whole preg was depressing, but honestly once you have your baby you will feel like it was all worth it. I really felt so low and couldn't see anything out of my left eye once having my baby for about 2 months and just a dot in the right (this was retinopathy tho not the edema) however holding him was the biggest comfort. Don't forget they can't see much at first either and all the need in initially is your love. My family were my rock and helped me out for a few months (taking it in turns to be with me and baby) and it turned out OK in the end. Do you have a supportive family who can help you during and after?The Mac edema massively improved after having him (it's still a problem for me, but it was far far worse duting pregnancy and I can drive work etc now). Having counselling is a great idea, I still feel I need it amd was never offered. Also, get a good eye doc you trust, I saw so many different ones and no one ever gave me hope..just one and I stuck with him although I do feel like they stay detached from the patient a bit, he gave me options and a successful vitrectomy. What you are feeling is normal, don't feel your life has been spoiled..it's stopped you in your tracks now (but a baby will do that anyway) and once your eyes recover you can get back on it, where abouts are you in the world? Keep your chin up, I was in an awful state and I survived and with good enough eyesight to carry on almost as I did before (just with a few extra challenges)I just don't know whether to risk it for another, reading your story brings it all back actually..Lots of hugs you WILL get through this, keep notes after each appointment. Ask if you should have a planned c section as they may suggest you deliver on the dot at 37 weeks if your eyes are still struggling. You can have treatment after your little one is born xx

 

[ljj1000]

@Emilyprice
Thank you for getting back to me. It actually made me cry so nice to know I'm not alone. I have a strong family network. Iv just spent my life fearcly independent and this on top of everything is making me feel like I'm loosing control. How did the eye mask go?
You sound like the strongest person iv ever met. And if you even consider a second child I think that shoes your strong enough to go through what ever is thrown at you. Mine too was brought on by drastic reduction in blood glucose. I wish they had told me this could have happened I wpuld have most deffinetely done it gradually

 

[ljj1000]

@Emilyprice I'm in South Wales . Sorry about the bad spelling on my phone x

 

[doulaalyj]

I read this thread, which actually promoted me to join the community I messaged @Emilyprice yesterday. I hope to hear more from you! Very inspiring!

 

[noblehead]

I read this thread, which actually promoted me to join the community I messaged @Emilyprice yesterday. I hope to hear more from you! Very inspiring!

On looking at Emily's profile she's not logged on for 17 weeks, but hold tight and hopefully she'll reply to your pm (and Azure's tag) or other ladies will see your thread and reply.

Best wishes and good luck.

 

[ljj1000]

I have now had my baby.
My left eyes vision is still very bad, but my right eye spontaneously got better around 24 weeks pregnant.
I used the noctura night mask religiously and I swear that it saved my vision. Happy to give info on my treatment and everything if anyone is.going through the same

 

[doulaalyj]

What is the mask? I've never heard of that. I'm in the U.S., though... maybe it's not available here? Thank you for the kind help, guys. I appreciate it so much. Today has been really rough, emotionally.

 

[ljj1000]

What is the mask? I've never heard of that. I'm in the U.S., though... maybe it's not available here? Thank you for the kind help, guys. I appreciate it so much. Today has been really rough, emotionally.

It's called noctura. It's a sleep mask that omits a green light while you sleep. It stops the retinopathy progressing it also helped the oedema in my right eye go away completely. It's. Quite pricey and only available privately (about 250 gbp a month) but in my opinion it saved my sight. I had 3 lots of laser on my left eye and it stopped the retinopathy progress but it made the oedema a lot worse and it is still very swollen still 13 weeks after having the baby. I'm more than happy to what's app call if u want to talk over.my experience.if I can help at all. I wish I had someone to talk to who had gone through the same.

 

[doulaalyj]

Thank you so much! Yes, I'd love to chat sometime. Let's figure out what time works best with the time difference lol

 

[himtoo]

hi ljj and @doulaalyj
i have worn the noctura mask for nearly 2 years and it has made improvements in my background vision.

I am not sure if it is available in the USA -- here is their website -- you could email them and ask -- they are lovely in their customer service dept. www.noctura.com

always avail to chat about my experience if required

 

[doulaalyj]

Thank you so much!

 

[doulaalyj]

I actually have a vitreous hemorrhage... would this still help?

 

[himtoo]

I actually have a vitreous hemorrhage... would this still help?

not sure to be honest -- that sounds like vitrectomy territory -- but always going on is the background retinopathy and if that can be calmed down / rectified - it has got to be a good thing regarding all round eyesight-- best to ask them directly at noctura -- they won't try to sell you something that won't help -- they don't advise it is for everyone -- they look at the individual

 

[doulaalyj]

True! Thank you!