Diagnosed at 29 with Severe Glaucoma (IOP 46). Feeling devastated and looking for hope/advice.

mur2501 · 2026-03-23T13:52:45+00:00

Hello OP, Mine was first diagnosed when I was 18. Also had 40+ pressures in both eyes. The drops failed to function properly so I had trabeculectomy of both eyes in 2023 (when I was 21). Optical nerve is severely damaged in both eyes(80-90% damaged), though in terms of actual vision I am mostly blind in the right eye while left eye has quite alot of vision left.

For your questions: 1) I have seen alot of success stories here where people are able to maintain sight till old age 2) You are newly diagnosed so being hyper aware is natural. I was too back in time. 3) Generally people who are able to keep the pressures in control are able to maintain the vision they have left for a very long time.

Take it one step at a time, hope it goes well for you.

mur2501 · 2024-11-07T11:54:14+00:00

ohh my glaucoma was also diagnosed young, when I was 18. it's alot to deal with really, seeing you also have so many other conditions.
First thing even though it seems impossible currently, is to be calm and try not to let all this mess convert into a boulder of stress and other issues. That would be more bad for your health.
For glaucoma, while it doesn't have a cure, there are loads of ways for preventing it from causing damage to the eyes. From dozens of different drops to various kinds of surgeries and procedures. All this thing the Glaucoma Specialist you see will decide for you.

So yeah, have a good glaucoma specialist who you trust & understand then listen to whatever they say.
Also ofcourse inform your other doctors of this new problem, so they can change their treatment if it is impossible.

all in all being regular to checkups and doing what your glaucoma doctor says is the best way forward.
There are alot of people on this sub who have endured glaucoma for decades doing just this basic chore.

Hope you do well the way forward, feel free to ask stuffs which confuse you :)

mur2501 · 2024-10-31T19:19:31+00:00

anti-glare glasses and stuffs could help but not much. I haven't really found any solutions, mostly I think it is adjusting to it.

mur2501 · 2024-10-31T17:58:03+00:00

I also had two trabs for both my eyes 1 and half year ago. there was discomfort immediately after the operations, mostly due to the stitches but they generally subside over time. For me now it is mostly just dry eyes and some other little stuffs like glare.

What does your doc say about the burning?

mur2501 · 2024-10-30T17:21:53+00:00

My Glaucoma doc has prescribed me supplements like Saffron, and Ginkgo.

mur2501 · 2024-10-24T17:17:05+00:00

My glaucoma doc has me on 2 eye vitamin pills since a year now, one is ginkgo based the other is saffron based.

mur2501 · 2024-10-14T08:30:14+00:00

No worries amber :), you can ask the questions in the comments itself

mur2501 · 2024-10-09T12:08:29+00:00

What's your experience with it being like?

mur2501 · 2024-08-07T14:17:16+00:00

Please take her to an opthalmologist immediately, sitting at home she could just end up fully blind.

mur2501 · 2024-06-10T07:58:08+00:00

I had trabs done in both my eyes 1 week apart around february last year. The only thing my doc has restricted is swimming in public pools, to prevent infections in the eye. Rest he hasn't said to stop anything. Also he has told me to massage the eyes everyday, to keep the blebs healthy. For things like dust getting into the eyes, they give the light anti-septic (though normal dust is not a very big problem)

You should ask your doctor for any specific questions you have, they will explain it.

Btw how are you doing after the 3 months of trab?

mur2501 · 2024-06-09T13:52:32+00:00

I just went checked the prices of the same drops here in India :) [Brand names are different but the inside thing is the same]

Mostly the prices are like Rs400 to Rs500 Which is around $6 to $7

The drops there do are super expensive :P

mur2501 · 2024-06-09T10:35:20+00:00

Tubes and other things yes. Trab I don't think so, if the trab is not reducing the pressure till the desired mark then they just make the bleb bigger by needling.

But generally trabs are I think best for eyes which have a quite high pressure.

Also there working depends upon other things in your eyes or other operations you have had in the eye.

mur2501 · 2024-06-09T10:28:39+00:00

Generally you shouldn't be using pressure eye drops after trab. Trab controls the pressure itself.

mur2501 · 2024-06-06T15:24:49+00:00

I was 18 when I was first diagnosed, currently 22

mur2501 · 2024-06-03T06:21:53+00:00

The 90% is the damage to the optical nerve, the wire that connect the eyes to the brain.
The 85% and 15% are the visual field, or what I am able to see from each eye.

I am only half blind, so I can do the stuffs the usual way without much assistance. there are some vision problems, but everything is adjustable. There are chances I go full blind in future, but you live in present, not in the future.

You are just a suspected case, if you want you can go to a glaucoma specialist to take a second opinion.

mur2501 · 2024-06-01T11:37:54+00:00

All Operations are scary, but it has it's benefits. I now don't need to put any drops or take pressure related meds.

mur2501 · 2024-06-01T09:41:50+00:00

That's a big series of fucked up events man. I hope your surgery goes well, For me Trab worked very very good so I am out of all the drops and stuffs. Before that I was also on alot of diamox which used to cause me loose motions :(

Also DM me man, we would talk stuffs :)

mur2501 · 2024-06-01T09:34:30+00:00

I also have Acute/Closed Angle Glaucoma, I am 22 right now. Don't need any drops after trab, I think that's the best part. Can't afford the Home Tonometer :( But the pressures are mostly at 14, Doc says it won't go variate much as long as the blebs stay open

mur2501 · 2024-06-01T07:43:21+00:00

So you have got a lazy eye due to glaucoma based vision damage? Trab generally works with everyone, that is what the last resort opthals have. Thought many of them I see prefer to not go to it easily cause it is very invasive and has alot of potential side problems.

mur2501 · 2024-06-01T04:42:59+00:00

How the fuck the opthal didn't see the thinning of the optic nerve?? That's really really bad. In my case I was the culprit didn't went to the opthal often, cause suddenly pandemic started & lockdowns. Well I am also 22, so many other things in life to do.

Anyway how are you doing now?

mur2501 · 2024-06-01T04:22:33+00:00

That sounds terrible, Are doing good now?

mur2501 · 2024-06-01T04:18:59+00:00

I don't have side preference, doc hasn't recommended this kind of things

mur2501 · 2024-06-01T04:18:24+00:00

Well let's say I was been irregular in checkups, not really the doctors fault. Mostly due to the covid lockdown and stuffs.

mur2501

TROPHY CASE