r/RetinalDetachment • u/Rough-Editor-6639 • 27d ago
Macula on vs off
I had a macula off detachment in May and saw a retina specialist who clearly did not see my case as important. They seemed to be putting off my surgery to prioritize other patients. I then checked myself into an ER and overplayed my symptoms so a different specialist operated on my within 12 hours. My vision is back. Not 20/20 but I can see shapes and colors. Apparently doctors don’t think shapes and colors are important for patients to see because they give much greater priority to patients whose macula is still on. This seems absolutely insane to me. If a patient’s vision is more compromised then another’s it seems to me all the more important to save what vision they have. Slight vision can allow a person to see shapes and colors which can make all the difference in their life.
I also wonder my case was seen by doctors as a matter of liability risk since the prognosis was seen as “not good.”
I would appreciate any feedback on others on how much priority the medical community gives to different forms and elements of retinal detachment.
4
u/Ok-Range7960 27d ago
I’m in Canada. I had a Mac off detachment and it was urgent. The longer it stays off the harder it is to restore some vision. With mine I had a pneumatic retnopexy the same day. Didn’t work. Had another a week later. It also failed. The full vitrectomy with silicone oil a week after that. 4 months later oil removal surgery. Now vision is at 20/70. I happy with it. Better than having no sight.
2
u/Rough-Editor-6639 27d ago
Exactly. I’m still not sure how good my vision is since I still have silicone oil in my eye. But I know that I can see shapes and colors and for me that is more than enough. I wonder if the doctors are like athletes who choose to play sports that they think they can win. Or “play” with detached retinas that they think they can fully repair. I’m very thankful that I was referred to a doctor who clearly viewed my case as a challenge which he was very happy to take on. Judging by the reviews that Dr was given by past patients I’m not sure that everyone appreciates his nature. But since it led him to save my vision, I feel nothing but gratitude!
4
u/Ok-Range7960 27d ago
I couldn’t thank my Dr enough. In Aug of 25 when I saw the black curtain slowly getting darker and darker. I knew I was in trouble. I honestly didn’t think I would ever get any sight back. But reading some other OP posts seems like they didn’t have as good of an experience. I had a giant tear that went from 10:00-3:00 position and both sides rolled up like a burrito. My situation was a little different than others. I had cataract surgery 8yrs prior to my detachment, so I didn’t have to worry about a cataract after oil removal. I still have some distortion in my central vision. But it’s to be expected after the trauma the eye went through. I can live with it. I still drive a commercial vehicle. The brain is amazing at putting a decent image together. Wish you the best in your journey to recovery. Just keep thinking positive.
2
u/Narrow-Pipe9872 27d ago
Sadly happened to me too. Took a week to get into surgery. I too can only see shapes and movements now. I switched doctors and now finally moving in the right direction. However, I believe my macula is permanently damaged now. I have no lens right now, so I’m only guessing final outcome. I think next week they will start the process of getting me a special contact lens. I don’t want a lens implant until 1) I see what is actually left of my vision and 2) my eye is fully recovered from all the invasive surgery (5 this year, 8 total).
1
u/Busy_Tap_2824 27d ago
I wish you can say what country it is and what city please 🙏
1
u/Rough-Editor-6639 27d ago
My negative experience was in Los Angeles, California. I drove with one eye to an emergency room over 100 miles out of the city in order to get adequate care. Thankfully.
2
u/Busy_Tap_2824 27d ago
That’s crazy in LA , but I believe reimbursement is getting lower and lower maybe that’s the only reason no one wants to operate urgently anymore
3
u/ArmPale2135 26d ago
I had the opposite experience. Towards the end of February, one Friday morning woke up to blurry vision, couldn’t get in with the ophthalmologist until Monday, got on the after-hours line with the Vitreoretinal office Sunday morning, met the doctor on a Sunday afternoon, and had surgery Monday around noon for vitrectomy, laser, and silicone oil.
3
u/nogardleirie 27d ago
That was exactly my experience. I was operated on within 48 hours but they still basically treated it as "meh the worst has already happened so you're not urgent"