Second surgery for retinal detachment

Hey all! I’m 26F, diagnosed with marfans very young.

So I got a bit of bad news yesterday. Recently underwent surgery for a retinal detachment, scleral buckle and cryotherapy.

All seemed to be healing okay until yesterday I was told the fluid was still there and that I need a second surgery. My detachment has seemingly been caught with plenty of time to try new things. They said it was chronic, had probably been sat at this stage for years and so not progressing quickly.

But I’m just really scared about the second surgery not being successful and them not being able to fix it at all and just slowly going blind in that eye. I know I am lucky to have a bit of time on my side but then I’m worried about my ‘good’ eye too (which is already -15 so very much at risk too).

I think for the second procedure they are essentially repeating a buckle but using a different material and draining the fluid.

Does anybody have any experience with this? I’m just super upset about the whole thing but trying to remain positive.

Thank you all!

in marfansby Spiritual-Weekend-54

88%

7mo

oneacru

7mo

Damn tought situation

Spiritual-Weekend-54

7mo

Yeah not having a good time at the moment hahah

tallr0b

7mo

I bumped my head hard and tore my retina last year. I did not know it was a Marfan’s issue (technically I have Beal’s).

A week after my head bump, I was sitting in the dark watching TV, and noticed “Fireflies” buzzing my peripheral vision when I moved my head. When I figured out that it was my eye, I went to see the eye doc the next day, the retina doc the day after.

He immediately laser welded the tear to head off a detachment. Laser surgery feels like “slushee brain freeze”, but in your eye. It seems to have worked. I had a year followup a couple of months ago — all fine.

Does your retina doctor have that tech available?

Spiritual-Weekend-54

7mo

Very similar to me - didn’t have a head bump, just naturally with marfans genetics. But I first noticed the static/fireflies in the corner of my eye! Thought I had a migraine coming on until the morning when I noticed a shadow flickering and it was all a-go from there haha.

So my surgeon says that, with marfans, he would recommend the buckle and even redoing it because he’s seen more success in that long-term with marfans patients. However if it doesn’t work again, then we’ll be looking at other options including the gas bubble and potentially laser. Luckily, mine isn’t progressing quickly so there’s wiggle room.

I’m trying to be hopeful that the second surgery is the one but I also want to be realistic and emotionally prepare myself for whatever outcome.

Thank you for your response! I’m glad everything is okay for you now!

ne999

Diagnosed with Marfan

7mo

I have had two retina detachments. One required a buckle. It's rough for sure.

I'm not sure about the fluid part. Do you mean there is fluid behind the retina? That can happen and they may just have to do some injections every now and then afterwards. It happened to a friend and also one of my doctors.

Good luck and try not to thing about problems that may not happen. I know it's scary but try to live in the present if you can!

Spiritual-Weekend-54

7mo

I think I’ll need to ask for some clarification because my surgeon said there was still fluid behind the retina, meaning that it’s still detached and that they would essentially need to redo the entire surgery? Drain the fluid and replace the buckle he said. Maybe I have misunderstood because I don’t actually fully understand it and there’s not much info online for me to compare. I’m in the UK going to a specialist eye hospital so I’ve just put my trust in them.

And thank you very much for your kind words, I’m really down about it at the mo but you are right about staying in the present. I’m hopeful that the next surgery will be the last, at least for a while. Thank you!!

megmatthews20

7mo

Not the exact same thing, but I had retinal detachment in my left eye. Got the scleral buckle, did the bubble where I had to look straight down for more than three months in my case. Had severe glaucoma in the eye that needed to be treated quickly, so had another laser surgery. Months later, my lens ended up popping loose and now free-floats in my vision.

It was all very frustrating, but I had great doctors who managed to save the eye. The vision in it isn't great, or even good, but I'm happy with what I have.

I hope everything works out for you. We're not always the luckiest, but we are lucky to be alive at a time when doctors can do something about our situations!

Spiritual-Weekend-54

7mo

Thank you for sharing your story, I’m so happy they managed to save your eye! Must have been really difficult looking down for three months after the bubble but like you say, at least you are feeling positive about what was saved.

Thank you very much! Funnily enough, that’s what my mum said, that I’m lucky enough for there to be treatments available!

megmatthews20

7mo

I'm happy to share! It's been quite the journey. Wishing you all the best!

wastrel1887

7mo

My suggestion would be to seek a consultation with Robert Cionni, MD; formerly of the Cincinnati Eye Clinic, and now located somewhere in Utah (?).

Anyway

wastrel1887

7mo

He is a pioneering eye surgeon with extensive experience and knowledge regarding marfan syndrome.

Spiritual-Weekend-54

7mo

Sadly I’m located in the UK so this won’t be possible! Sorry I probably should’ve mentioned that in my post. But thank you for taking the time to respond!!