Living with CSCR (Central Serous Chorioretinopathy)

Well, here I am checking in again 🙂 Since my last update, absolutely nothing has changed... at least nothing for the better 😢 I’ve been stuck using anti-inflammatory drops constantly, and naturally, that triggered issues with ocular pressure. The CSR keeps flaring up and receding intermittently. So now, instead of just managing inflammation, I’m juggling eye drops for pressure as well. As for the side effects, I won't even go there... I can't even look at myself in the mirror in the morning without feeling a sense of dread because I don't recognize the person staring back... bloodshot eyes and massive dark circles under them... it's gruesome. It feels like this ordeal will never end. swiftscout8, I truly hope things are going more smoothly for you? Regarding my diagnosis and the ophthalmologist herself, I wouldn't trade her for anyone else in the world. She nailed the diagnosis immediately, yet despite her expertise, I've already developed adhesions that have left my pupils completely distorted.

I don't get bothered by much, except for the Diamox, but this fluid buildup just won't budge. There’s always a little bit left there, and it’s constantly getting under my skin. Honestly, I’m right on the verge of having to start injections...

Is anyone else here still dealing with CSR? Even better... has anyone actually gone through with photocoagulation?
I’ve been struggling with macular Edem since last December. I’ve tried all sorts of drops and took Diamox for two and a half months (and yes, the side effects are real, just like someone mentioned). Things felt a tiny bit better, but it was incredibly slow progress. Then everything just tanked—it got worse once, then twice, then a third time... until my vision just vanished.
It’s been nearly six months now. Since the Edem is massive and I'm down to only 30% vision in that eye, I’ve decided to go for the laser procedure. I'm back on Diamox again, but it isn't doing a thing, and honestly, that last major dip in my vision happened while I was actually on the medication... 😢
Here’s what I don't get... they told me the laser treatment (photocoagulation) happens right in the same room where they perform the OCT and stuff. You just sit in a chair while they aim the laser near the macula. That sounds a little terrifying to me! I want to know if anyone has been through this—what is the actual procedure like? Do they use something to fix your head or eye in place? My fear is that if you move even an inch, instead of treating the eye, the laser hits the wrong spot and causes permanent blindness. That seems totally illogical. How does the system actually work during the procedure? If anyone has experience, please describe it for me.
Feel free to DM me if that's easier.
Thanks in advance...

@Chloe Morgan13, I don't have any firsthand experience with that specific situation... I've dealt with CSR myself, but I never actually went through with the laser treatment because I didn't have a reason to. Did you end up getting it done? What was the actual process like? Tell us everything... I'm trying to understand how this Edem develops and why your vision has dropped so significantly. Are you feeling any better now?

The Edem cleared up for me. I still have a scar inside the macula that shows up as a bright, distorted line, but overall, I've got 99.9% of my vision back.

Stay away from stress and corticosteroids.

crimsonpuma10 said:@Chloe Morgan13, I don't have any firsthand experience with that specific situation... I've dealt with CSR myself, but I never actually went through with the laser treatment because I didn't have a reason to. Did you end up getting it done? What was the actual process like? Tell us everything... I'm trying to understand how this Edem develops and why your vision has dropped so significantly. Are you feeling any better now?

I had the laser procedure at the end of June. Honestly, it was exactly what I’d heard... You just sit there in the chair while the doctor tells you, "Just stay perfectly still, everything depends on this!" It sounds terrifying, but hey, you get through it. It was a nerve-wracking experience. Even though it takes less than 10 minutes, watching the equipment work while they stare at papers and tell you to stay calm—you're absolutely terrified they might permanently damage your eye.
I went in for a checkup a few days ago, and things are finally looking up, even if the recovery process is incredibly slow.
My vision dropped because I had several bad flare-ups. During the last one, I lost my central vision entirely. The Edem became MASSIVE, and that’s why my sight vanished. I was basically blind for about a month and a half until I had the procedure. It was brutal, truly. 😢
It’s been nearly two months since the laser treatment. At first, my vision started returning gradually, but then there was a sudden dip where everything looked distorted again and reading letters became impossible. I had to head back to the clinic to see what was going on. The OCT showed things were improving, but my vision had still dropped by 50% for me. Now, it has improved slightly again, and I'm praying it stays that way. Objects still look small and distorted, and reading text feels like... well, like reading through water. But compared to how bad it was, this is actually great.

Once you deal with chronic CSR, there’s really no turning back. For me, it keeps coming back sporadically, just subtle, nagging issues here and there.

swiftscout8 said:Once you deal with chronic CSR, there’s really no turning back. For me, it keeps coming back sporadically, just subtle, nagging issues here and there.

Exactly. My doctors told me it’ll likely recur because it’s been dragging on for so long. People who get it and clear up the Edem within two or three months usually forget they ever had it. :<

What do you mean by it coming back "mildly and subtly"? What does that actually look like?

Chloe Morgan13 said:Exactly. My doctors told me it’ll likely recur because it’s been dragging on for so long. People who get it and clear up the Edem within two or three months usually forget they ever had it. :<

What do you mean by it coming back "mildly and subtly"? What does that actually look like?

It's just a tiny bit of Edem—just enough that I'll miss a single letter while reading something on a screen or in a book. Then it vanishes after a few days. Everything stays fine for months, then suddenly... just a little something again.

swiftscout8 said:It's just a tiny bit of Edem—just enough that I'll miss a single letter while reading something on a screen or in a book. Then it vanishes after a few days. Everything stays fine for months, then suddenly... just a little something again.

Alright, that sounds manageable—not too scary at all. You don't have to run from doctor to doctor, dealing with endless OCT scans, constant checkups, and piles of medication. If that's how it goes, I can handle it. Thanks for sharing this; those are truly comforting words. =) I really hope my experience follows that pattern.
Right now, I'm stuck on Diamox and a whole bunch of other "miracle" drugs for months on end. It demands so much time, money, stress, doctors, and everything else. As if being half-blind wasn't enough! So, your prognosis feels like a real light at the end of the tunnel compared to everything I've heard so far.
🙂

Chloe Morgan13 said:Alright, that sounds manageable—not too scary at all. You don't have to run from doctor to doctor, dealing with endless OCT scans, constant checkups, and piles of medication. If that's how it goes, I can handle it. Thanks for sharing this; those are truly comforting words. =) I really hope my experience follows that pattern.
Right now, I'm stuck on Diamox and a whole bunch of other "miracle" drugs for months on end. It demands so much time, money, stress, doctors, and everything else. As if being half-blind wasn't enough! So, your prognosis feels like a real light at the end of the tunnel compared to everything I've heard so far.
🙂

I was on Diamox for about ten months myself. Now, I just head in for checkups two or three times a year. There's some scarring left, but nothing major—just a little light streak. My advice? Watch out for hypertension, stress, and corticosteroids.

swiftscout8 said:I was on Diamox for about ten months myself. Now, I just head in for checkups two or three times a year. There's some scarring left, but nothing major—just a little light streak. My advice? Watch out for hypertension, stress, and corticosteroids.

I was on Diamox for about two months before they took me off it. Then, because things were getting worse, they put me back on. Ironically, while on Diamox, my vision actually worsened to the point where I lost sight. So now, I've been taking it for months—honestly, I've lost track of exactly how long.

I have no idea what kind of "scar" I'll be left with, but I suspect it will look pretty much like it does now. I used to have this massive circular spot with an extremely bright border. Now, the inside of that circle is completely bright, while the border remains visible and slightly darker. Inside that, there's a smaller spot that keeps shrinking as the Edem subsides. I think that large circle is permanent, though I barely notice it unless I'm looking for it.
What really bothers me is the slight distortion and how objects look smaller. For instance, when I look at a wall clock, it looks at least 15-20% smaller through that eye. I also see a bit of darkness in that eye, but I'm staying optimistic that it will clear up once the Edem goes away and the retina finally settles back into place...

Avoiding stress is easier said than done. Everyone gives that advice, but you can't exactly move to a deserted island to escape it... :-/

Everything was exactly the same for me. The symptoms were identical, all of them. That bright ring at the edge of the Edem hasn't budged. Even the image itself looks slightly distorted. Don't hold your breath waiting for it to fix itself.

swiftscout8 said:Everything was exactly the same for me. The symptoms were identical, all of them. That bright ring at the edge of the Edem hasn't budged. Even the image itself looks slightly distorted. Don't hold your breath waiting for it to fix itself.

Yes, I’ve accepted that it’s here to stay.
The edge of the Edem looks fine now, but the center feels bright—almost translucent. There’s just this one little spot that's shrinking, which will probably vanish once the Edem fully recedes. Still, that outer ring will likely remain... :/
As for the distorted vision, I've adjusted to it, though it really bugs me that objects look smaller than they should. I'm worried that part won't change either.
My only real concern right now is night vision. It’s been tough... the less light there is, the less I can see out of that eye. I really hope that improves or at least gets significantly better because driving at night is becoming a real struggle. It’s even impractical just moving around the house late at night when the lights are off.😢

Objects are going to look larger over time. That purple blotch you see at night and the white one during the day? It’ll fade, but the image will stay slightly distorted, along with those bright streaks and that massive central circle. You're looking at a loss of vision by a few percent. Once that's gone, it doesn't come back. And yeah, I dealt with my image shrinking by about 20 to 30 percent myself. Just enough to make my prescription feel off.

swiftscout8 said:Objects are going to look larger over time. That purple blotch you see at night and the white one during the day? It’ll fade, but the image will stay slightly distorted, along with those bright streaks and that massive central circle. You're looking at a loss of vision by a few percent. Once that's gone, it doesn't come back. And yeah, I dealt with my image shrinking by about 20 to 30 percent myself. Just enough to make my prescription feel off.

Well, it is what it is. My vision dropped by 30%. I could practically see nothing out of that eye. Letters had to be absolutely massive just to read anything, and people's faces looked like they were shrouded in darkness. It was terrible. If things stay the way they are now, I can live with it. Compared to how bad it was, this is actually okay, even if it isn't "normal."
I just hope it doesn't spiral back to those levels. That’s what scares me... waking up one morning completely blind in one eye and facing months of treatment all over again. If I only have to deal with minor issues like you did, I'll take it.

It’s interesting you say that; for me, it mostly went south in the middle of the night. Never during the day. I'd go to sleep around five, then wake up the next morning with this massive blotch right in my field of vision. It never happened during daylight hours—always while I was sleeping. They dragged me through the wringer with head MRIs, neck scans, evoked potentials, EEGs... you name it. Was it MS? Some other neurological issue? This, that... the usual runaround.
Then, at one clinic, they finally found an Edem on my macula. Dammit, all it took was actually running the right tests to separate the facts from the noise.

swiftscout8 said:It’s interesting you say that; for me, it mostly went south in the middle of the night. Never during the day. I'd go to sleep around five, then wake up the next morning with this massive blotch right in my field of vision. It never happened during daylight hours—always while I was sleeping. They dragged me through the wringer with head MRIs, neck scans, evoked potentials, EEGs... you name it. Was it MS? Some other neurological issue? This, that... the usual runaround.
Then, at one clinic, they finally found an Edem on my macula. Dammit, all it took was actually running the right tests to separate the facts from the noise.

I don't get why they put you through all those other tests. When my spot first showed up, my doctor asked what it looked like and if it moved, then sent me straight to the eye ER. The specialist there took one look and told me I had Edem, some bleeding in the eye, and whatnot. My eye felt like someone had literally set it on fire for the first time... basically, we knew immediately what it was. I didn't need any other tests. Just an OCT and everything else focused strictly on the eye.

They didn't actually perform a retinal scan; you can't see that manually. Either those two ophthalmologists who first saw me were just incompetent. It took two years of this mess before they finally figured out what was going on. Pure negligence, nothing else.

swiftscout8 said:They didn't actually perform a retinal scan; you can't see that manually. Either those two ophthalmologists who first saw me were just incompetent. It took two years of this mess before they finally figured out what was going on. Pure negligence, nothing else.

They were clearly incompetent, plain and simple. You can spot Edem the second someone looks at your eye.
The doctor I saw noticed the chaos in my eye immediately, then sent me straight for an OCT. Even without the OCT, she told me my eye was in bad shape. Honestly, I have no idea how those two ophthalmologists missed what was going on with your eye. They obviously care about their jobs about as much as a snowflake melts in July. 😠 If we weren't talking about health, I might understand... but this? And it's your vision! Doctors like that really get under my skin.