Upcoming vitrectomy…

[T1Mum4]

Hi all,
I’m new to the forum but some background I’m a new first time Mum and been T1 for over 22 years.
I apologise for the lengthy post I just feel some background would be relevant.
For the past (approx) 10 years I have been experiencing retinopathy and macular oedema. It has been proliferative for a good while now and Iv had about 40 anti VEGF injections in each eye and maxed out PRP laser. It’s been rough!
I fell pregnant unexpectedly after being told it would be unlikely I’d naturally conceive so yes an amazing surprise and blessing but not ideal in terms of T1 and complications!

The injections id been receiving had kept my retinopathy relatively stable however they’re contraindicated with pregnancy and therefore they stopped. During pregnancy I had my first two (small) bleeds which cleared themselves. I thought this would be it once my baby arrived however Iv since had numerous, much bigger bleeds. First in the left and now the right. Iv been left with limited vision which is heartbreaking, scary, frustrating, all the emotions. I can no longer care for my baby alone and need constant support getting out the house etc.
I have been booked for an urgent vitrectomy on the left which is in about 3 weeks. Honestly? I’m petrified at the procedure and also my prospects for the future. I thought it was bad enough with one eye, I lost a lot of my independence then with no longer being able to drive etc then the other eye has gone!
I guess I’m looking for any success stories, advice or reassurance. Maybe even some knowledge on the above.
If you made it this far, thank you!

 

[T1CJ]

Hi there, I'm in a similar position. Don't have reassurance but hoping I can get the same reassurance for myself. It's scary not knowing what the future holds.

 

[Helen40]

Hi, I was in a very similar position, you may had had the op by now but i thought I'd share my experience... my bleeds got so bad they happened on a weekly basis, I didn't even have hand movement vision and I truly thought it was the end of my sight. I couldn't drive for 8 months, couldn't go out walking alone, see what was on shop shelves.
Then I got a vitrectomy in my right eye, 10 days post op as the air bubble line got lower and lower I realised my vision above it was as clear as looking through clean glass! The op isn't pleasant but it only took 30 minutes for mine and I talked to the surgeon during it!
I would love to get my left eye done too but as it is currently stable they're just observing it. My right eye was done in May this year, I have a very small cataract already forming but that can be sorted when the time is right. To be able to even see the feathers on birds, read subtitles on tv and be independent again was unbelievable, my partner left me when my eyes were very bad and now I can stick my finger up and say 'too bad you gave up on me'
I wish you lots of good luck and enjoy the opportunities this operation can give xx

 

[T1Mum4]

just an update for anyone that may find themselves here in a similar position.

I had left vitrectomy in October 24 then the right followed in December. I have, since recovery, had the best vision Iv had since it all began. I see very well and have been able to resume all activities that my vision previously stopped.
I honestly wish I’d got the vitrectomy so much earlier but as my consultant said, there are risks and not always the same outcome therefore they like to wait it out a bit first to see if the bleeds clear.
The procedure itself wasn’t too bad as I requested a light sedation. No pain was felt and the worst part was probably the local anaesthetic. Once that is done, it’s fine.

 

[lovinglife]

just an update for anyone that may find themselves here in a similar position.

I had left vitrectomy in October 24 then the right followed in December. I have, since recovery, had the best vision Iv had since it all began. I see very well and have been able to resume all activities that my vision previously stopped.
I honestly wish I’d got the vitrectomy so much earlier but as my consultant said, there are risks and not always the same outcome therefore they like to wait it out a bit first to see if the bleeds clear.
The procedure itself wasn’t too bad as I requested a light sedation. No pain was felt and the worst part was probably the local anaesthetic. Once that is done, it’s fine.

Glad to hear your procedure was a success and you’ve been able to get back to things you enjoy