Blind and Visually Impaired Community
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Retina reattachment surgery postponed, not sure how to feel (self.Blind)
submitted by ZaiJ1an
To give a bit of background I was born with ROP and am currently only able to see out of my right eye. Last week, after 4 years I finally got rated for a new prescription at 20/200. I have been in and out of procedures with my eyes and told I couldn't get a new pair so the eye "doesn't change".. On Tuesday I went in for a routine yearly checup with a retina doctor. I was told I needed "immediate surgery", and that I had a "severe detachment", but the doctor became sick and unable to preform the surgery as scheduled. I was referred to be seen yesterday by a major research hospital in the Southern US. I was told to come up unexpectedly at 8am and not to eat or drink. I expected to be put under the knife/laser because of that.
They took me in, a nurse gave me an eye exam where I scored about 20/200, 4 lines down. Peripheral vision was diminished but not terribly.. and the tech took 200 sets of images. The rest of it was a mixture of waiting, various tests I can't name, and vague reassurances that it "wasn't severe". They eventually determined that I have a peripheral retina detachment. Basically I see floaters, light flahes, but the center of my eye is flat and attached. They proceeded to put some kind of gel on my eye and produce images with my eyes closed (I think for the back of the eye?). At around 4, I was told I would "probably need surgery or laser" and the earliest they could preform it would be tomorrow.
At 5-6pm the Fellow and another junior doctor asked me what my vision was rated for after seeing a low vision specialist a week ago. I told them, and the fellow stated "Okay based on that you need to come see us Tuesday, that's when the doctor with your speciality is in. We don't feel comfortable trying to fix this without their opinion."
How do I cope with this mentally? It wasn't immediate enough to need surgery that day rightt there and then, but it's still an immediate medical emergency that I don't want to have fester. I work part time, have limited insurance, and was planning a big trip to Europe to see family in late August. It just strikes me as odd they felt as though this procedure could be pushed back almost a week. I mean.. we're playing with my one good eye here, that's not a bet I want to lose. Might the response have been any different if I had said "oh my eye was rated for 20/400"???
They took me in, a nurse gave me an eye exam where I scored about 20/200, 4 lines down. Peripheral vision was diminished but not terribly.. and the tech took 200 sets of images. The rest of it was a mixture of waiting, various tests I can't name, and vague reassurances that it "wasn't severe". They eventually determined that I have a peripheral retina detachment. Basically I see floaters, light flahes, but the center of my eye is flat and attached. They proceeded to put some kind of gel on my eye and produce images with my eyes closed (I think for the back of the eye?). At around 4, I was told I would "probably need surgery or laser" and the earliest they could preform it would be tomorrow.
At 5-6pm the Fellow and another junior doctor asked me what my vision was rated for after seeing a low vision specialist a week ago. I told them, and the fellow stated "Okay based on that you need to come see us Tuesday, that's when the doctor with your speciality is in. We don't feel comfortable trying to fix this without their opinion."
How do I cope with this mentally? It wasn't immediate enough to need surgery that day rightt there and then, but it's still an immediate medical emergency that I don't want to have fester. I work part time, have limited insurance, and was planning a big trip to Europe to see family in late August. It just strikes me as odd they felt as though this procedure could be pushed back almost a week. I mean.. we're playing with my one good eye here, that's not a bet I want to lose. Might the response have been any different if I had said "oh my eye was rated for 20/400"???
LittleTay 3 points 1y ago
As someone whom had Retina Detachment surgery twice, I would just trust your doctor.
I know that you don't really have any other choice at the moment, but just be patient. I know that living with only one eye is hard, and having something be done on that one eye is even harder, but just hang in there.
I know that you don't really have any other choice at the moment, but just be patient. I know that living with only one eye is hard, and having something be done on that one eye is even harder, but just hang in there.
ZaiJ1an [OP] 3 points 1y ago
This will be my second time undergoing the procedure. The first time was on my left eye, where they put in some kind of oil solution. After they took the oil out my vision just got worse and worse over the course of a few months. I am going to trust these doctors and just go with it, hopefully I can get seen for surgery Tuesday - but they'll decide that day what to do.
I have this sinking feeling.. I feel as if I'll get a few months of good sight and then once the oil is removed (like it was with the left eye) the acuity in my right will go - if they even choose to use oil and not gas. The first thing they said when I mentioned the Europe trip was "I don't think the Queen Elizabeth is running anymore, so you either get your eye fixed or go on the trip".
What happened in your case?
I have this sinking feeling.. I feel as if I'll get a few months of good sight and then once the oil is removed (like it was with the left eye) the acuity in my right will go - if they even choose to use oil and not gas. The first thing they said when I mentioned the Europe trip was "I don't think the Queen Elizabeth is running anymore, so you either get your eye fixed or go on the trip".
What happened in your case?
[deleted] 3 points 1y ago
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ZaiJ1an [OP] 2 points 1y ago
Fair point, yeah. At the end of the day it is just how life goes sometimes. I'm going to be seen Tuesday morning so.. hopefully it doesn't degenerate any more than it already has. I just wish they'd actually been able to contextualize like "hey this is what the situation is, compared to what the first doctor said".. I don't know if i'll even have surgery that day. Supposedly both doctors are booked over 100%... god knows what will happen
[deleted] 1 points 1y ago
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MrMaisy 2 points 11m ago
I have had something very similar happen. I had ROP born at 24 weeks. My retina detached at 14 then again in other eye at 24. (I’m 24 now) I had to wait a little over a week once they found the detachment. I hated waiting and was like “why can’t they do it now and get it over with”. From my experience I think they waited because they were confident enough that it would not be an issue to work on until a week later. Other than that I can’t wrap my brain around it. I feel you wanted to get it done with and having that strain on your brain. I also want to add I got oil with my eye and was able to get on an airplane about a month after because the oil doesn’t effect the pressure in the airplane. I hope you are doing well and I’m wishing the best for you.
SiriuslyGranger 0 points 11m ago
Sometimes life isn’t fair and you have to pray to the Lord that it goes well.
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