Posts by Chloe Morgan13

coastaltiger7 said:That’s just not true. Some optical shops do have ophthalmologists; the one near me has one working there every single day. I'm not sure about posting photos on a forum, but I literally have my results from today right here. It clearly states Dr. Grcic, MD, Ophthalmology Specialist. They even did a fundus exam, which an optometrist doesn't do. I was there with my grandma, and she’s been referred to a retinologist, so we’re heading to Svjetlost tomorrow.

I used to go regularly to that optical shop over on Waterworks where a doctor from Vinogradski Hospital used to visit.

OK, that's the first I've heard of something like that.
In the 20 years I've been wearing glasses, I've visited plenty of different optical shops, and it has never been an ophthalmologist. Either I just had bad luck or you did... who knows! ;-)

Keith Morris3 said:Chloe Morgan13. I had surgery over at Johns Hopkins Hospital, and honestly, it took those doctors six whole weeks just to figure out I was having an allergic reaction to a preservative in my artificial tears. To make matters even more fun, I also had H. pylori running around in my system at the same time, though I didn't actually find that out until three months later after getting a gastroscopy.

I am so sorry they missed all of that! :-( Honestly, there is nothing worse than dealing with doctors who just can't get the diagnosis right.

I can't speak specifically to the ophthalmology department over at Johns Hopkins Hospital, but I do know a ton of patients have transferred from other facilities to Holy Spirit. They seem to be the heavy hitters for ophthalmology in Washington, D.C., especially when it comes to retinal work!

I spent a massive amount of time sitting in that waiting room, just waiting for endless appointments, so I heard just about everything. A ton of people ended up switching providers because they were completely dissatisfied.

coastaltiger7 said:Keith Morris3, sorry, just saw the question. The doctor's name is Kresimir Mandic.

I don't think that's quite right. The eye doctor I go to doesn't just measure sight; they perform fundus exams too. They work through insurance referrals, basically just like any other clinic you'd visit.
And obviously, you don't expect them to fix major issues, but being sent to the hospital with advanced cataracts when the specialists find only minor ones is a bit concerning, I guess.

Anyway, none of the drops have helped my mom, and her vision is still pretty blurry. She’s going in for a follow-up this week, so we'll see what the doctor says. But honestly, it feels like that might be it—not much hope for things getting better.

An optometrist works at an eye clinic, while an ophthalmologist works at a hospital =)
So, you can draw your own conclusion about who is better qualified to diagnose actual eye diseases or disorders. 😉

As for whether an actual ophthalmologist is coming to the clinic, I honestly have no idea. To be truthful, that would surprise me. I haven't heard anything about that.

I'm not sure if that last post was meant for me or for Vidi ;-)
In any case, you hit the nail on the head. CSR doesn't just pop up overnight, but it certainly causes problems fast.
On the flip side, CSR never drifts around the eye. It’s a spot—or a blur, as you call it—but it stays fixed in one place. It might change shape, grow, or shrink, but it won't move up, down, or float around like those little white spots that tend to wander...
Which hospital are you seeing for your eye issues?

coastaltiger7 said:A retina specialist over at Johns Hopkins Hospital diagnosed my mom with CSCR.
The optometrist told her she has a cataract, but the folks at Johns Hopkins say it's negligible and doesn't actually have anything to do with her vision issues.

An optometrist is just there to measure vision, not to treat eye disease. Don't take their diagnoses seriously.

Keith Morris3 said:Chloe Morgan13, would you mind sharing which ophthalmologist you saw for your CSR checkup? A few months back, I dealt with a nasty sinus infection, and ever since then, my left eye has been acting up. One morning, I just woke up and everything looked blurry in that eye. I went to see a doctor a couple of days later, and sure enough, they diagnosed me with cataracts in both eyes that apparently need surgery. But here's the thing—with my left eye, it feels like that blur is actually shifting around, and from what I understand, cataracts aren't supposed to move like that. They did a fundus exam and told me everything looks fine, but I’ve got a bad feeling about this "moving" spot in my left eye. Looking at what others have posted, it seems like a lot of people have run into similar issues with this diagnosis.🙏

Hi Keith Morris3, sorry... you sent this right when I was also struggling with sinus issues...

Sinus problems are exactly why your eyes want to quit on you and start aching. That was my experience... for three days, I could barely even open my eyes because of the pain. I just stayed in bed, squinting or sleeping. It was brutal...
My eye situation got worse immediately; a spot appeared and everything. But while I was debating whether it was worth heading to the ER or not, things started to subside slightly, so I'm hoping it settles down again.

I don't believe a sinus issue can cause cataracts, but I'm no doctor...
Cataracts affect the front of the eye, whereas CSR affects the back, and ophthalmologists often specialize based on that. Basically, a very small number of specialists focus on the posterior segment. So, I can't tell if that doctor is clueless, uninterested, or if the diagnosis is actually correct... I'm seeing Doc Bosnar at Holy Spirit. He is a true specialist for the posterior segment. He's an excellent doctor—I've noticed people go out of their way to see him for every little thing, creating huge crowds at the hospital, even for us who show up with serious eye trouble, but oh well....

coastaltiger7 said:And I honestly have no clue how bad this actually is. It says here:
OCT macula: left eye NS elevation

FOD: PNA clear borders at the level of the surrounding retina, retina is attached, no threatening changes in the periphery, macula is normal

FOS: everything same as FOD except for the macula with RPE obstruction

So, I guess I just wait until the follow-up...

Hmm... that word "detachment" could mean anything from minor to severe. The OCT report doesn't specify the exact extent. And I don't quite grasp how much your mom is struggling visually... is it just a slight annoyance, or has her vision plummeted?

I’d suggest she keeps up with the drops for at least a month or two. That should give enough time to see if things are improving or worsening. If her vision gets better, she can gradually taper off and stop. However, if her vision takes a massive dive, she needs to go back sooner. Go straight to the eye ER, tell them her vision dropped drastically, and demand a re-evaluation. Still, I assume the results aren't catastrophic if they just scheduled a routine follow-up. At least, I hope so...

coastaltiger7 said:My mom was just diagnosed with CSCR in her left eye. She was prescribed Naclof drops, three times a day, but it doesn't say how long she needs to keep using them. Her follow-up appointment isn't for another 4 or 5 months. Does anyone know if she should keep using the drops until that check-up, or what?

Theoretically, yes, until the check-up. But waiting 4-5 months for a follow-up seems odd.
What did her OCT show? How bad are the results?
It doesn't seem practical to use Naclof for that long without a follow-up to see if there's actual progress.

Well, my Edem is back... :-(
First, I had some light sensitivity for a few weeks, almost like someone was constantly shining a high-powered flashlight right in my face. I knew immediately it wasn't just about the light. Then, a little spot appeared a couple of days ago, and today, there's a full-blown circle in all its glory. When I read, I can clearly see that the image is darker in that eye, though thankfully I can still manage to read. I haven't lost my vision like I did last year (at least not yet).
Looking through your old posts now, it seems like many of you dealt with this returning back then too, though maybe not as intensely, and it cleared up on its own. But last year, they told me mine would clear up on its own as well, so now I'm starting to panic a bit... Should I head to the doctor or just wait it out? What if waiting just makes things worse?? I really don't know what to do. 😕

lonejackal61 said:Been stuck in this exact same spot for two months now. Honestly, the worst part is feeling like things are actually getting worse while the doctors just shrug and tell me to sit tight. It feels like everyone I meet dealing with this is just watching their vision slip away without any real progress. Trying to stay positive, but man, it’s tough, haha.
The craziest part? Some days I feel like I'm seeing sharper than ever, like things are finally clearing up. But then, the second I get stressed out, that pressure hits my eye and I'm right back at square one—or even lower.
So, folks, does this actually pass or am I just cursed? Also, has anyone had luck with supplements, vitamins, or anything like that?

For supplements, you could try Dietpharm Makulin plus or Nutrof total. You can actually find Nutrof total a bit cheaper if you head over to a nearby pharmacy in Canada..
Stress is absolutely the worst part of this diagnosis, but like you said... it's hard to avoid :-/
That fluctuation where you feel better and then suddenly worse might mean something else is aggravating the situation. Are you taking any corticosteroids?
If you’ve had a vessel burst in your eye, it is incredibly important to avoid heavy lifting, moving furniture, or any kind of physical strain.
We're all basically just unlucky with this diagnosis, unless you're one of the lucky ones where it clears up in three or four months and never comes back.
So, there's still a real chance you're in that group where it improves over time and stays gone. Those of us who struggled with this for a long time have a much higher chance of it recurring multiple times. 😢
Bottom line: stick to your treatment (if you have one) and hope that in a month or two, you'll be past this! =)

swiftscout8 said:Here I am, back again because of my friend CSR. It’s pretty obvious now that this is all happening because I used corticosteroids...

Huh :-<
Cortis are supposedly terrible for CSR. I really hope you have a very good reason for sticking with them :-/
For years, I used a nasal spray for my sinuses that contained cortis. Everyone insisted it was fine and wouldn't cause issues, but the truth is different. Once this eye issue popped up, I stopped the spray immediately on my own. A few months later, I tried using it again, and things went downhill within days. I haven't touched it since. My allergies have been much worse because of it, but I'll take bad allergies over this crap any day.

Actually, the exact same thing started happening in my other eye, which totally freaked me out. My right eye developed a small spot, and then the left one started showing signs too. To make matters worse, I moved abroad, so managing follow-ups and doctors has become a huge headache.

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.

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.

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.

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.😢

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... :-/

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.
🙂

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?

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.

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...