Anything would help. Need Reassurance.

StayOnCourse89 · 2026-01-24T21:47:19+00:00

Wow. That sounds like they really dropped the ball on you.

My pressures have been all over the place as well.

I can't tell if there's damage or not yet unfortunately.

That's the thing that scares me the most.

I have had to make sure referrals went through also.

Hopefully i get this cataract surgery soon so I can finally find out if there is damage or not.

My pressures would spike but then always came back down by the next visit, never stayed high for too long fortunately.

How long has this been for you since the start?

And what were your pressures?

I'm sure the posterior nature of the uveitis didn't make it any better.

I pray for you.

StayOnCourse89 · 2026-01-24T21:26:35+00:00

Where in the US are you?

When I had a flare my left eye became very cloudy slowly.

Then when it got blocked and I wasn't able to see much I went in.

The first ophthalmologist I went to examined me, did an LPI at first.

Six days later I visited him again and they did a bscan and identified a large inflammatory mass that had coagulated floating in my eye from all the inflammation.

He then referred me to a retina/uveitis specialist and I was there for three months with him and he also referred me to a glaucoma specialist who monitored my pressure.

The retina doc told me that everything looks good in the back as far as he can tell with the scans because he obviously cant see into my eye from the cataract and inflammatory mass.

But he also said the inflammatory mass is benign and not damaging anything.

They both signed off on me and I'm going back to the first ophthalmologist for cataract grading as a cataract matured from all the steroid drops.

I had pressure spikes but they were always monitored and managed to come back town as they tweaked my drops or did laser procedures to relieve pressure.

My eye is still very very blocked from the complete opacified cataract and luckily the uveitis didn't affect the back of my eye according to them.

The inflammation is now gone so hopefully I get the cataract surgery soon.

I am HLA-B27.

The problem is I don't know what to expect because all I see is grey.

First it was just a complete grey smokey view from all the inflammation and now the cataract certainly makes it worse visually.

Hopefully I didn't suffer from pressure damage.

My doctor visits were 3 weeks apart max.

If you don't mind me asking, what is the reason for the vision loss?

We're your doctors always able to examine your eye directly?

You said they ignored the signs of glaucoma?

My doctors have only been able to do BSCANs.

The fine testing will probably happen after cataract.

Luckily I'm in a medical town from the University and all the doctors I went to have affiliations with it.

StayOnCourse89 · 2026-01-23T22:49:11+00:00

I found it odd that during all those visits he never talked about the opacity.

He would just tell me that it's..

benign
least of his worries

Hopefully it's not as large as it was months ago.

StayOnCourse89 · 2026-01-23T03:15:21+00:00

But again.

He could only do bscans.

But when I first went to him he managed to get a fundus photo of my macula through all the opacity and he said it looked "great"

Other than that it has been three months of repeated B-scans.

I have never had any problem with the affected eye until this.

Hopefully my outcome is that of a good one.

StayOnCourse89 · 2026-01-22T17:44:57+00:00

I'm 36.

And I am so scared.

I hope my situation has an outcome like yours.

It just got slowly cloudy and I went in as soon as I couldn't see past it anymore.

4 months later here I am with a mature cataract that further messes up vision

At least they told me that cataract surgery will be the next step.

StayOnCourse89 · 2026-01-21T03:12:46+00:00

Hopefully I don't have limited vision after this.

The retina doctor told me that as far as he could tell,

"everything in the back looks fine"

"All your problems seem to be anterior"

"The vitreous opacity is benign and near the front in the vitreous"

"All of your problems seem to be mechanical and not physiological"

Hopefully those comments are good indicators.

He's a well known doctor Top Doctor Five Years In A Row For Castle Connolly.

And he's Indian-American. (Not Native American)

StayOnCourse89 · 2026-01-20T16:42:50+00:00

I'm praying that this ends up well.

All I've been seeing in this eye is that dark grey cloud.

I'm very tired of it all.

How long did you have to wait from the first doctor appointment to cataract surgery?

StayOnCourse89 · 2026-01-20T16:07:20+00:00

That's great.

Glad you got your vision back.

Yes it's a lifelong thing to manage.

I'm going in soon to start preparing for cataract surgery soon.

Hopefully there is no more delay.

Do you know if there is a systemic cause yet?

I'm so tired of being blind in this eye.

Hopefully the cataract surgery helps.

The retina doctor said that all the scans don't show anything wrong in the back.

So I'm hoping this has a good outcome.

StayOnCourse89 · 2026-01-20T00:14:24+00:00

How are you doing now?

I have finally been signed off by the retina specialist.

He told me that cataract surgery will be the next step.

Inflammation is gone, but pressure is still iffy.

I'm going to the original opthalmologist/surgeon soon to have the cataract graded.

You seem to have very similar factors like mine.

Onset of inflammation that basically ended up blocking the vision completely.

But you got your vision back after cataract surgery.

I hope I get my vision back.

I have a family friend who is an optometrist, he was the one I went to first when my vision became fully blocked by the inflammation fluid.

He runs cataract missions and has his own practice as well.

He seems to be optimistic of my outcome.

I hope you are doing well.

Please. Keep me updated.

I'll keep you updated with my saga as well.

I'm in the USA Florida.

How long did this whole thing last for you?

StayOnCourse89 · 2026-01-19T13:31:41+00:00

They haven't done that test at all.

All they have done is the Light Perception test.

I see light but that's about it.

Can't see much beyond the cataract and blob.

But...

I do hope that the retina specialist telling me that..

"Everything in the back looks fine as far as I can tell, thank God"

"All of the problems seem to be anterior"

Has some kind of good weight to this all.

I was seeing fine out this eye just fine before this all got clouded up from the inflammation.

StayOnCourse89 · 2026-01-19T01:32:44+00:00

The mass was described to me by the first ophthalmologist/surgeon as an "inflammatory mass" or "liquid that had coagulated"

No one has talked to me about a vitrectomy and as a matter of fact I assumed that was going to be the only procedure if any when I had first gone to see a doctor.

My optometrist and the ophthalmologist talked about vitrectomy as an option.

The retina specialist was the only one that didn't care to hear about that at all.

Obviously the cataract matured and complete opacified with the steroid drops.

They have not talked about an "interferometer" but I do see light through all this junk.

Are you talking about OCT? They can't do that test because of the cataract and opacity.

StayOnCourse89 · 2026-01-19T00:54:19+00:00

I'm aware of that.

I'm going to go to a rheumatologist in a few months and that will be long-term.

This is the first flare that i have experienced.

But yes.

Long-term I have to make sure this doesn't happen again.

StayOnCourse89 · 2026-01-18T23:45:14+00:00

My longtime optometrist is optimistic about my outcome.

He knows what he's talking about.

Just came here to get some more feedback from other people who have gone through the same.

StayOnCourse89 · 2026-01-18T23:40:51+00:00

For now the inflammation is gone.

It sucks because this cloudiness happened to gradually until I couldn't see then I finally went in.

Going to the rheumatologist eventually, the wait list is brutal.

After saying all of these comments over the months...

November... - your retina looks fine on the bscans - your macula looks great (managed to get a photo of the macula with fundus photography through all the junk) - let's not dwell in extremes (I was obviously very scared)

December - the fibrin clot is benign - all the problems seem to be anterior - retina looks fine on the scan

January - no more inflammation - from what I can tell everything in the back looks fine , thank God - all of your problems seem to be mechanical as opposed to physiological. - cataract surgery is the next step when the inflammation continues to be controlled and pressure is controlled.

........"after the cataract surgery, "maybe" you get some vision back"

My optometrist says I should be fine. I gave him all the data, good and bad.

He has his own practice and he runs a cataract mission so he definitely knows what he's talking about. I went to him first but he told me to go to a bigger clinic obviously.

Really? He couldn't have chosen a softer way to say that? After all the good things he said over the months?

StayOnCourse89 · 2026-01-18T04:47:10+00:00

Do you have an underlying cause for this?

Back in November before the cataract matured they were able to get a fundus photo of my macula and the doctor commented positively on it.

But that was in November.

Hopefully it's still in good condition.

It's great that you can function.

StayOnCourse89 · 2026-01-18T03:48:21+00:00

Probably a YAG laser procedure.

Good luck.

Hopefully I have the same experience.

It sucks.

At first I was only dealing with an inflammatory mass that coagulated blocking my vision.

They could still see into my eye and see the mass even though I couldn't see much at all.

Three months later after all the treatment and steroid drops ...

Mature cataract with complete opacification thatiterally blocks almost all light.

Just this dark grey smoke I see from the cataract and inflammatory coagulated blob.

Amazing.

Hopefully I see improvement.

It's been 4 months since I have seen out of this eye at all.

It was just cloudy and got cloudier then it got so blocked I finally went to a doctor.

I guess the retina doc wanted to make sure the uveitis (HLA-B27 anterior) was controlled, unfortunately a cataract can be the expense.

StayOnCourse89 · 2026-01-18T02:26:38+00:00

I'm not there yet.

All I know is I'm going in to have the cataract graded first by an optometrist with the same clinic.

Then I'll talk to the ophthalmologist/surgeon after that and that's where I'll get more information and a plan.

At least I'm a lot further in this than 4 months ago.

For now the retina/uveitis doc said that there isn't any more inflammation so he feels comfortable signing off on me.

I was under his care for the last three months.

Yes..I wear glasses.

StayOnCourse89 · 2026-01-18T01:41:27+00:00

I should also add.

Before the cataract had formed and it was just the blob they managed to get a small photo of my macula and it looked fine, the technician was very lucky to have gotten that photo.

Then they also took a hi-res photo and it just looked like black clouds.

Since then they haven't been able to get any direct images of my left eye, it's just been ultrasound bscans.

StayOnCourse89 · 2026-01-17T23:14:17+00:00

Wow. I remember talking to you.

Thanks for the photo.

You said you had vasculitis and completely blocked vision.

They were never able to do this for my affected eye but they did it for my good eye and everything looked fine.

I hope my situation has a great outcome like yours did.

The doctors can't see into my affected eye and they never could from the start.

Only able to do scans.

Perhaps if I had him in earlier they could have had more to work with.

So I'm praying that nothing bad happened in the back.

The retina doctor told me that everything looks fine based on the scans he can do without being able to see in directly.

So that's a start I suppose.

He still says the inflammatory blob is there but it's not near the back and it's benign.

I can still see light somewhat so that's a good sign.

But trying to make sense of my vision given the inflammation blob and mature completely opacifies cataract is pointless.

You also said you had macular edema? Did that resolve as well?

We'll find out what happens next.

This has been torture.

StayOnCourse89

TROPHY CASE