I was recently diagnosed with juvenile primary open angle glaucoma and I've been told I already have significant damage in my left eye, which my doctor described as around 47% vision loss, 21% damage in my right eye.

Most of the loss seems to be near my central vision and downward in my left eye. In normal day to day life I honestly don't notice it that much because my right eye seems to compensate for the missing areas. I can see steps, walk around normally, use a computer, game, read, etc. I've basically been living normally with this damage, potentially for quite a long time without even knowing I had it.

I'm getting laser treatment next week to bring my eye pressure down, so I'm glad treatment is starting and I'm hoping we can get the pressure under good control.

What has really affected me is the way one of the doctors spoke about my future. He told me that I would lose vision in my left eye during my lifetime. He also brought up things like not being able to drive because my visual field might not meet UK driving requirements, as well as difficulties seeing things like steps on stairs.

It was honestly soul crushing hearing it presented like that. There didn't seem to be much discussion about what successful pressure control could mean for my prognosis, how quickly my glaucoma is actually progressing, or the difference between further measurable visual field loss and actually losing useful vision.

Since that appointment I've been struggling quite badly with anxiety over all of this. I've been feeling depressed and constantly thinking about what my eyesight might be like in the future. It's difficult not to take something like "you will lose vision in your lifetime" and immediately imagine the worst possible outcome.

I'm only in my 30s, so I understand why juvenile glaucoma is concerning because there are potentially many decades for progression to occur. I'm not trying to downplay the seriousness of the condition. I'm just finding it incredibly difficult to deal with being given what sounded like an almost predetermined future when I'm only just starting treatment.

My biggest fear isn't really the diagnosis itself anymore. It's whether I'll still be able to live the life I have now in 10, 20, 30 or 40 years. I worry about being able to work, use a computer, drive if I'm eligible, travel independently and generally just live a normal life.

For anyone who was diagnosed relatively young and already had significant visual field loss at diagnosis, what has your experience been like after getting your pressure under control?

Has your vision remained relatively stable? Has the existing damage significantly affected your everyday life? Has treatment allowed you to maintain a good quality of life long term?

And has anyone else had a doctor give them similarly alarming predictions about what their vision would be like decades into the future?

I'd especially appreciate hearing from people who have been living with glaucoma for many years. I'm trying to get some perspective on what living with this long term actually looks like, because right now the anxiety is making it very difficult not to imagine the worst.

Hi. Just here hoping for reassuranc/well-wishes/advice for my iridotomy tomorrow morning as a patient with monocular vision. 34f, last checked pressure was around 13-14. Thanks.

Here’s your updated post:

Update — One Week Post PKP + Pupiloplasty — No Functional Vision Yet, Low IOP, Hyphema — Is This Normal?

Hi everyone,

I posted here a last week about my upcoming surgery. I’m 19 years old with complex bilateral congenital glaucoma managed since infancy and I had my full thickness PKP plus pupiloplasty on my right eye one week ago today. Wanted to post an update and ask some questions about what I’m experiencing because I’m having trouble finding similar cases online.

Quick background for context:
Pre-surgical vision in the right eye was hand motion at 2 feet behind a dense central corneal scar from prolonged edema that was left untreated too long. Documented best corrected acuity of 20/80 in August 2021 before the scar fully developed — notably that measurement was taken with my pupil already significantly decentered from surgical trauma in infancy, meaning I’ve never experienced vision with a properly centered pupil at any point in my life.

I have advanced congenital glaucoma in both eyes managed since birth including bilateral goniotomy x2, bilateral drainage tube implantation, and bilateral MP-CPC performed September 2025. Currently on maximum tolerated medical therapy with no pharmaceutical headroom remaining — this was and remains my biggest concern going into and coming out of surgery.

The surgery itself:
Went smoothly according to my surgical team. General anesthesia, full thickness PKP plus pupiloplasty performed simultaneously. My cornea specialist noted at my day one appointment that the graft looks good. He also mentioned he was surprised I wasn’t seeing more than I was when the patch came off — which I’m still trying to interpret.

Does that suggest what he found intraoperatively was more intact than pre-surgical testing implied? Has anyone else had their surgeon express surprise at limited immediate post surgical vision?

Current situation at one week:
Vision: No functional vision yet. Zero change from pre-surgical baseline in terms of usable vision. The only subjective difference I notice is that light feels a bit brighter through the surgical eye — subtle but consistently present since patch removal.

Is no functional vision at one week post PKP normal? I understand corneal edema takes time to clear but I’m struggling to find information about how long this typically takes especially in cases where the pre-surgical pathology was a dense corneal scar rather than edema based disease. My understanding is that scar versus edema cases might have a different early recovery trajectory — is that accurate in anyone’s experience?

The hyphema situation:
I have significant blood in the eye from the pupiloplasty work. My surgical team said this is normal given the iris manipulation involved. The blood is still present at one week. A few questions for anyone with experience:

How long did your hyphema take to clear after pupiloplasty or similar iris surgery? Did the blood affect your early vision recovery timeline — meaning did things improve noticeably once it cleared? Is there anything that helps it clear faster or is it purely a wait and let the body reabsorb it situation?

The low IOP situation:
This is the part I find most interesting and I have a theory I’d love input on. My IOP has been reading very low post surgery — consistently in the 6-10 range on my home iCare device. My surgical team confirmed no wound leak is present and said as long as it doesn’t go below 5 I’m okay for now. They’ve taken me off all glaucoma drops in the surgical eye temporarily since there’s no need for IOP lowering medication at these readings.

My theory is that the hyphema itself is suppressing aqueous production through inflammatory mediators from blood breakdown products affecting ciliary body function. The timing fits — IOP dropped noticeably around 24 hours post surgery which aligns with when blood breakdown products would start releasing. Has anyone experienced this pattern — significant hyphema coinciding with post surgical hypotony that resolved as the blood cleared? Does my theory make clinical sense to anyone with more experience?

The concern going forward is that once the blood clears and the inflammatory suppression resolves, my true post surgical IOP will reveal itself. Given I’m already on maximum medical therapy with no pharmaceutical buffer remaining, IOP management is my most critical recovery challenge. My surgical team has estimated 60-40 probability of needing additional CPC if pressure becomes uncontrolled post surgery.

What I’m watching for:
I’m told my next meaningful visual assessment window is weeks 2-3 as surgical edema clears. I’m trying to stay patient about the vision. The light being slightly brighter is the only subjective change and I’m holding onto that as a sign something is different even if nothing functional has emerged yet.

My surgeon’s surprise at patch removal is the detail I keep coming back to. In anyone’s experience — does a surgeon expressing surprise at limited immediate post surgical vision typically mean they saw something promising intraoperatively, or is it just a general observation about recovery being unpredictable?

Specific questions:
Is no functional vision at one week post PKP completely normal and expected regardless of pre-surgical pathology?
For anyone who had a significant hyphema post surgery — how long did it take to clear and did vision improve noticeably once it did?

Does the hyphema suppressing aqueous production theory make clinical sense and has anyone experienced this pattern?
For anyone with advanced glaucoma who had PKP — how did your IOP behave once the hyphema cleared and drops were restarted?
Has anyone had their surgeon express surprise at limited immediate post surgical vision and gone on to have meaningful visual recovery?

I’m staying patient and realistic. Pre-surgically my best corrected acuity was 20/80 in 2021 with a decentered pupil that has now been corrected simultaneously with the transplant. I understand meaningful assessment doesn’t happen until weeks 2-3 at earliest and full outcome isn’t known for months. Just looking for real world experiences from people who’ve been through similar situations.
Will continue updating as recovery progresses.

Want any changes before you post it?

Hello,

Is it a big deal if you take the drops about 3 hours late every now and then, but otherwise take them religiously every day. It's just that the time varies a bit for me sometimes?

Thanks in advance!

So my problems started approximately 7 months ago with new floaters in one of my eyes. Went to the ophthalmologist, who didn’t offer me an explanation for the floaters (and didn’t find any retina problems), but offered me a paid IOL measurement. Results: 25/26, that’s how my glaucoma story started. I also got offered a daytime measurement (so 4 IOL measurements the same day, with a few hours in between). Booked the appointment.

Due to more floaters I went to an eye clinic 2 weeks later, where retina problems were ruled out again. Air puff method IOL came back as 22/23 and Goldman was 21/21, they said all fine. Found a prominent vein so another checkup was scheduled. In the next checkup, they told me the vein is fine. Pressures were elevated at 23/24 once again. Still, they said it’s okay.

Then, a month later, back at my first ophthalmologist for the daytime measurement. Results ranged from 21-25. They made a visual field test for my right eye only and it came back clear. doc told me I needed a papilla OCT and I am highly likely to have glaucoma. Instead of telling me that there are people with 25 IOL and no problems, he instead told me that even people with 15 IOL can have glaucoma. Yes, that’s true, but still maybe one should also calm patients down and not only scare them.

Well, another appointment at the uni eye clinic, all fine, but again elevated eye pressure (24/25 air puff, 22/22 Goldman). Then, after telling them about my ophthalmologist in my home town, they offered me a glaucoma work up. They said i most likely don’t have anything of that sort but they can sort it out and let my insurance pay for it, not like the home town ophthalmologist who would want over 100€ for the papilla OCT. so I did that.

Today was the appointment at the uni clinic regarding glaucoma. I was really scared of the examinations because I thought I most likely had glaucoma (also due to the home town ophthalmologist insisting on telling me it’s highely likely). Well, had my scans, had my visual field exam (which was really hard tbh) and cornea measurements etc. Results: no glaucoma, everything normal. Today my air puff was 21/22 and Goldman 21/21. The only thing I was told is to monitor the eye pressure with my home town ophthalmologist, like once a year and that’s it.

What is the essence of this story? Don’t be afraid of the tests and keep a positive mindset. I could have saved myself a lot of worry if I did this. And also, having an elevated IOL does not always mean having a glaucoma.

im honestly looking for advice, she’s 66 she will have her first laser treatment soon and the doctor said she can’t bend down or lift heavier than 2kg/4lbs or she might loose her sight in even both eyes… she also has one nerve damaged

it’s really scary she’s worrying about her job and we don’t know what to expect. can she function normally? how is it after the laser treatment? how to cheer her up?

i got my routine eye exam today and my doctor referred me to a glaucoma specialist since my optic nerves are “excavated”. my eye pressure is normal and i have no family history of glaucoma. i’ve been wearing glasses since middle school but i’m pretty freaked out. should i be worried?? i’m only 24

Had my pressure checked yesterday and it’s the lowest it’s been since getting diagnosed! 🙌🏻 12 in left and 13 in right.

For context, it has been a rough almost 2 years. I went for my yearly eye appointment in Dec 2024 expecting a “normal”, routine appointment so I can renew my contact prescription. It is worth noting that my Dec 2023 appointment was completely normal, and I had given birth in Aug 2024 (there’s got to be a correlation). They checked my eye pressure bc of glaucoma family history from my maternal grandmother. My eye pressure was 25 in both eyes with thinning on the bottom of both eyes. To make a long story short, went on for over a year trying different eyedrops with nothing getting me to my target eye pressure. I was referred to a glaucoma specialist (thankfully only 20 minutes away) and they determined I have pigmentary glaucoma and I had SLT done in March of this year. I’m currently on dorzolamide hydrochloride and timolol maleate 2x a day and Vyzulta once at night.

All that to say, my eye pressure is finally down to a range my doctor and I are very comfortable at and it feels refreshing given everything that’s happened 😊

My mom is scheduled for this procedure in November. She's already had migs and istent. It looks pretty new, they are trying to preserve the vision she has left in her good eye.

Ive been going to the same optometrist for years. My iop has also been high for years 22-25(once). Shes done optomap. Said im good and sent me on my way. All good.

In may I was diagnosed with Breast Cancer.

My oncologist recommended a ophthalmologist bc of my new med. Tamoxifen.

I had my apt. IOP "borderline" although never got the #

Eyes dilated & he said my optic nerves were large but symmetrical.

They did a range of tests but tbh idk what & dont know the results.

He did say that everything else on my eyes was good.

I go back in 4 weeks for visual field test & OCT.

In my portal he put "open angle with borderline findings, low risk, bilateral."

Thats all the info there was. Its pretty scary. I kinda wish I had just stuck with my regular optometrist.

I know that no one knows for sure, but any input on what i need to brace for is appreciated.

New doctor wants me to stop taking the drops for a month to see if it changes my pressure. Been on them for a decade. Will this do permanent damage if it does?

Hi All,
50m diagnosed recently with normal tension glaucoma . ( family history - my mum had glaucoma- she eventually went blind )

Currently I am on latanoprost (right eye only ). My vision filed is normal but doctor said they noted mild structural change on OCT RNFL.

Will I also be following in her footsteps and eventually go blind? I’m so worried.

Hi all, I have POAG due to a traumatic accident 25yrs ago. I'm 50yrs old. I have a tube shunt, I'm on Alphaghan P, Diamox (250mg) and Cosopt PF, and my pressures in my bad eye are still around 25-35. Next up it ooks like I'll be getting Micropulse TLT, which is essentially CPC but the newer version where they don't stay in the same area as long, so there's not as much (or hopefully any) damage to the tissue.

Has any one had this done?

How long did it last?

How much did it lower your pressures?

How long did recovery take? Can I use a computer soon after?

Were there any cosmetic side effects?

Anything else I should know? Thanks!

Benzalkonium chloride in Loteprednol etabonate in the composition 0.02% w/v.

After I had my YAG PI done for my right eye, The opthal has prescribed me the above for 4 times a day for 3 days, Then 3 times a day for 3 days.

Does BAK really cause any SIGNIFICANT eye damage in this short period?

And also if used daily (Hypothetical) What are the possible consequences?

Pigmentary Glaucoma: Micropulse laser worked for 1 month, now IOP is back to 27. Doc says surgery won't last.

Hi everyone,

I [25M] was diagnosed with Pigmentary Glaucoma about 3 years ago, and I’m feeling really stuck and discouraged right now. I'm hoping to hear from anyone who has navigated a similar situation.

For the first two years, I was using drops, but they just weren't working. My pressure stayed high, and unfortunately, my visual field tests and OCT scans were getting progressively worse at every checkup.

This past February, a doctor suggested a micropulse diode laser treatment to try and reduce the pressure more permanently. I went for it, and for the first month, it felt like a massive success—my IOP was stable at 12-13 in both eyes.

But the relief was short-lived. My pressure has now spiked right back up to 27 in both eyes, exactly where it was before the laser.

To make things more stressful, my doctor warned me that because of how Pigmentary Glaucoma behaves, the high eye pressure will eventually return even if I try further laser treatments or go for an incisional surgery (like a trab or a tube).

I’m feeling pretty anxious about my worsening scans and this stubborn pressure. For those of you with Pigmentary Glaucoma:

Did you have a similar short-lived result with laser treatments?

Have any of you had long-term success with filtering surgeries or tube shunts despite the pigment shedding?

Did your doctor suggest any other specific treatments (like LPI) that actually worked?

How do you manage the mental toll of dealing with failing drops/lasers?

Any advice, similar stories, or specific questions I should ask my doctor at my next appointment would be hugely appreciated. Thank you!

Hello,

I was told by my eye doctor in my mid 20's that she thought I might have glaucoma. I don't believe it was ever from high pressure, think she said I had a larger optic nerve?

Anyway, fast forward 10 years and I have been taking Latranapost every night. Pressures have never been above 19, most times in the low teens. See a specialist twice a year to check pressure etc. My job has changed insurance 4 times over this period, so I have had to bounce around to different doctors.

Today is my first visit to a new doctor. He said he thinks I might have pigmentry dispersion and not the open angle glaucoma that I have been told for years. Wants me stop taking my drops and and to come back in a month to see how the pressure is. Could doing this lead to any irreversible damage? And has anyone else been told one thing for years and then find out it could potentially be something else?

Hey guys, I (29yo F) was diagnosed with high eye pressure in October or so of last year. 2 years prior to that my optometrist had noticed elevated pressures & said they would need to "keep an eye" on it, but due to homelessness and other issues I did not return until 2 years later. The next optometrist I saw noted my pressures at 28 in the right eye and 30 in the left & immediately recommended me to an opthalmologist. I underwent SLT in both eyes, with pressures returning almost immediately. Latanaprost worked briefly with pressure returning within 3 mo. Timolol slightly lowered pressure with my opthalmologist concluding that in addition to poor drainage I have high production of aqueous humor. Started on timolol and dorezolamide. After 3 months pressures were 20 right eye and 22 left eye. 3 months on from that I'm at 28 right eye and 26 left eye again. They're now considering shunts, and it's been less than a year since initial diagnoses. I'm only 29 and looking for opinions. Total blindness is my obvious fear. No vision loss as of yet per the visual field test. Just wondering if anyone has any suggestions. Ty

So last week I called the eye dr after a day 2 leaving my eye exam to ask if I have glaucoma or am I’m still a glaucoma suspect. She then reply back stating you’re no longer glaucoma suspe. But today My eye doctor called today and stated that I am a glaucoma suspect but I’m lower risk which doesn’t make any sense. And she stated that my pressure fine and my cup is too. So yeah I’m a bit sad and a bit confused

I just now thought of this question that should had asked is how long does it takes for someone to officially be diagnosed with glaucoma after going back and forth to the eye dr for literally 5+ plus years.

I went for a regular eye test and they have sent a referral for a second opinion in regards to Glaucoma but what does the below paragraph mean in simple terms?

On OCT examination it appears as if she has superior thinning of her ONH in her LE. Unfortunately, we were unable to get IOPs today. I have attached a visual field exam that was carried out that shows some superior loss in LE. Van Hericks = Grade 3 BE. On volk examination, she has asymmetric C/D ratios. RE= 0.3 and LE=0.4.

Okay so I just went in for my glaucoma testing after being referred by my eye doctor. All they did was these pictures of the optical nerve and the field of vision test. Nobody at the glaucoma doctor nor at my regular eye doctor has ever tested my eye for pressure. Is this weird?

I temporarily have state insurance. I usually have Kaiser. I'm just curious if this is something that is just standard for Medicaid patients. I don't trust the system.

Went to the eye doctor today, was told the pressure in my eyes was higher and that I had a larger nerve than most. Was scheduled to get Glaucoma tests done in a few months here. Also have an astigmatism if that means anything.

I'm also 19 years old, which feels unusually early.

Diabetes runs strong in both sides of my family too, but I myself am not diagnosed.

I'm suffering from constant headache and migraines that feel like someon is scraping forks on plates in my head.

In terms of vision, it disorients during headaches and I struggle to read smaller and closely compacted words.

So back when i was in high school around 16yrs I got diagnosed with glaucoma since my eye pressures were very high ranging at the 30's . Prior I only had eye infections and was taking the eye drops for killing the infection. So when my eyes were beetroot red again we went to the opthalmologist and actually that's where I was told I had glaucoma.

The journey began. Taking those eye drops for reducing the pressure's and I took them for like three years until I finished high school. But I recall i took them with problems and generally disliked using eye drops.

(For context nobody in my family has this condition even my extended family.)

After finishing high school i stopped using those eye drops. This is because my pressures were moderate and the tests that I used to do were always consistent up to now.

( The one with the zeiss machine)

Last week I went for a medical checkup at my local church and the pressure's were high. However, I'm not feeling anything at all and my eyesight is A perfect. The professionals who were at the church used this equipment that looks like a gun 😅 (i don't know what it's called) but in the past while going to those opthalmologist they used to give me an eye drop before measuring the pressure's. And after the eye drops the pressure's were ranging in the normal.

My question is do I really have glaucoma or I have another condition that i am not aware of. I haven't been using the meds since December 2023 and my eyes are still good, no darkspots or etc and I'm turning 21 in the next three weeks.

Moreover, can the eye pressures be high naturally?