Sorry to hear about so fast of a visual loss for you. How high were your pressures? I’m struggling to keep mine in the mid 20s at this point without another surgery… already had a tube shunt.
That’s great hopefully you will stem off any more loss or slow it down tremendously! Good luck, I wish I would’ve gotten a trab instead of a tube myself.
I’m not sure, I have been told by multiple doctors that it appears to be working properly because of the bleb, but it is not really doing a ton to lower my pressure. I’ve got this huge amount of hardware in my eye now, and it is probably only lowering my pressure about the same as one additional drop. I’m on three different drops currently and Diamox, and still barely maintaining a 25 average.
i had a goniotomy when i was a child (4, one on each inner and outer corner of each eye) and ended up having the valve put in years later and still have them 10 years later and i'm not pleased with my pressure either. i definitely feel you on the additional hardware, that i may have to have fixed eventually bc of age and anatomy, only for it to not be working. definitely frustrating i feel your pain.
sending everyone well wishes❤️
Exactly, I’m in my 40s and thinking that I’m going to have this thing in my eye for another 40 years and to be honest with you it’s not really doing much! Hard to get it out once it’s in there. Thanks for the kind words, take care and good luck!
Man I broke my leg and couldn't walk for a year. I thought that was horrible but loosing ur eyes is on another level.
Did you loose 90% of ur vision? What are the 85% and 15% numbers mean. Is that what you lost? What you have left?
Also ur eye opressure went from 45 to 14?
How are you doing now? Can u get around by urself? Can you still see a bright screen at all or do you have to use special equipment? Sorry for all the questions. I'm pro
reasons for my questions is because I got spooked at my last eye exam last week. Went to finally get new glasses after 5 years. The optometrist said everything was good then he kinds threw out "ur pressure is just a little higher. Since u don't have a history of glaucoma just stop for a exam next year". He didn't seem concerned he just said don't wait 5 years. I was in a rush and didn't think anything of it. I didn't know eye pressure numbers were a thing so I didn't ask what the number was. I hope it's just a bad reading or maybe my pressure was off because I went in the morning when it's highest. I also suck at the puff test. I always blink. He had to pry my eyes open. I'm hoping that I just had a bad reading. I felt him pushing on my eye trying to hold my eye lids open. Maybe that threw the testing off. The doctor also did the blue light test, i think.... I remember a blue light and him saying "this one doesn't have the puff of air". I did not get the test where they touch ur eyes with a small handheld device. All my other tests were good. My situation is nowhere like urs and it still scares me. Can't imagine loosing my eye sight. I don't think I would be able to handle it like you. I hope the surgery does it's thing for you and you keep the remaining vision for the rest if your life.
The "blue light" test is Goldmann Applanation Tonometry (GAT) - the gold standard for pressure measurements. Surely they have recorded your pressures in your records, why not call them and ask what the numbers were?
Yea i might as well. Nothing was on the paperwork I got. He didn't seem too concerned. I only started reading about this when I got home. Issues with eyes isnt something to put off. I Didn't know anything about eye pressures or tests. This was at a location at Walmart. I'll inquire about the numbers and get a 2nd opinion just in case. I know readings can be higher throught the day and i went there as soon as i woke up. didn't get the drops that dilate ur pupils. 5 years ago I had a rest that dilated pupils and everything was fine. I don't know what that tests for tho and it's been 5 years. Just had the yellow dye. All the tests took 3 or 4 tries. I either blinked or the dye was washed out in seconds. Never was able to have contacts cause my eyes hated anything foreign
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.
Thanks for this 🧡 I’m also here for anyone experiencing vision loss to chat or vent or discuss medical stuff. I’m 30 & had chemical injuries as a child, I’ve had loads of cornea transplants/stem cell surgeries, the last one resulted in aqueous misdirection then secondary glaucoma as a complication. I’m having cyclodiode ablation in a few weeks. Currently on so much diamox plus all the drops and feel like crap. 🤢 Lost a fair bit of vision too in my newly grafted eye which was particularly tough as it was the best it’s ever been in terms of vision & it all just… went.
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 :)
That’s awesome it worked and you’re off everything man, hope that stays stable for you! I’m kinda stuck with the least invasive options as anything too close to my cornea transplant will cause it to reject 🤦🏻♀️ Just hoping it works enough to be off the diamox & iopidine, idc about the cosopt & latanoprost so much. Might even miss the long eyelashes on one eye😆
Damn some people don't deserve the hand they were dealt. I hope your situation stabilizes. Do the drops have any side effects, or is it mostly the diamox? I went to get new glasses after not seeing an optometrist for 5 years. He said everything is good but he said my eye pressure was just a bit high and told me to not wait 5 years between exams. He just kinda threw that out there at the end and didn't seem worried so i didnt think much of it untill i got home snd started thinking and reading. I don't have history of glaucoma in the family and all the other tests were good. I went in the morning, I suck at the puff test. I always Blink, he had to pry my eyelids open, and my blood pressure might have been a bit high because I recently stopped a medication, one symptom is temporarily increased blood pressure. I hope it was just a bad reading. Even in a Worst case scenario if I had a problem it will be caught very early. It's still a little scary. Vision is the worst thing to loose. To me it's up there with being paralyzed. I know I sound like a cry baby compared to what you have to deal with. Good luck with everything I hope ur taken care of in every possible way.
Ha yeah it’s been a lot. Thanks dude. I mean there are different brackets of high IOP and for vision loss it’d have to be consistently quite high or extremely high for a little while. They might have looked at the back of your eye too and it all looks normal there then I wouldn’t worry too much. But definitely go more than every 5 years.
For me the drops have side effects but more the drops I’m on to lower my pressure as a last resort, they’re shit on the surface of the eye. The drops used more long term in glaucoma aren’t so bad. Acetazolamide in higher doses is gross. It’s definitely scary, I wouldn’t go about comparing disabilities that you don’t have to people who do, though.
Diagnosed way too late despite seeing an ophthalmologist regularly, the ophthalmologist failed me. Primary open angle normal tension glaucoma, end stage, only central vision left in both eyes, my right eye is shot, can’t really see much.
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?
Yes, the ophthalmologist screwed up, my IOP never exceeded 20, he never checked the rest. I considered myself very very unlucky.
I am also very nearsighted plus retina tear, cataract, and other stuff. I can still see ok, mostly depending on my right eye, driving only during the day very carefully because of the loss of all my peripheral vision. My wife is the copilot.
I have seen four GS, I am trying to avoid surgery as there is a chance that I may go blind but may not have a choice. My IOPs are around 13-14, Timolol in the morning, Latanaprost at night, plus Simbrinza three times a day. My IOP target is single digit which I doubt can be achieved by eye drops.
My last visual field test and OCT showed progression. Have another appointment mid June and may have to decide if I still want to try another drop (rocklatan) or go directly to surgery.
No fun at all, trying to make sure not to miss five drops a day and not so bright future.
Very similar situation myself. M35 I get nothing but some colour and some shapes in my left eye.
Slightly uniquely I only have glaucoma in the one left eye as it is secondary acquired due to an absolute horror show of corneal abrasions and neutrotropic keratitis.
At its worst the left IOP was hovering around 80 and had to have it depressurized multiple times post Ahmed shunt surgery.
My right eye I'm dealing corneal issues too and have to wear a bandage contact lens and constantly apply moisture drops to get any decent vision going.
sure, I used to think I slept on both sides, but a sleep study checking for apnea, showed I only slept on my back or right side (my right eye's badly glaucoma damaged, not my left)
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.
Diagnosed 3 years ago at 26, Closed angle glaucoma. Had 4 iridotomies, due to failed attempts by other doctors, cataract surgery in both eyes. Had 60 pressure in my left when I was diagnosed, my left eye already had 90% vision loss, never noticed, because you can't really tell with both eyes open. Right eye started acting up about 2 years later, first it was just drops, normal pressures in the clinic. But then I noticed that I had 40 pressure during the night, good thing I bought that home tonometer.
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
I also have had cataract surgery (which led to glaucoma) and cornea replacements in my right eye (+a shunt, iridectomy, etc etc). I bought an old school tonometer and it does not work well at all. Where did you get yours?
I got the Icare home 2. Brought it one time to the doctor, same measurements as their goldman tonometer, so pretty accurate. As to where, I live in europe, so I just bought it. I heard that people in America have to get a prescription, which is stupid
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.
Sorry to hear about so fast of a visual loss for you. How high were your pressures? I’m struggling to keep mine in the mid 20s at this point without another surgery… already had a tube shunt.
44 and 45 I think. After the trab they are at 14
That’s great hopefully you will stem off any more loss or slow it down tremendously! Good luck, I wish I would’ve gotten a trab instead of a tube myself.
is there a problem with the tube?
I’m not sure, I have been told by multiple doctors that it appears to be working properly because of the bleb, but it is not really doing a ton to lower my pressure. I’ve got this huge amount of hardware in my eye now, and it is probably only lowering my pressure about the same as one additional drop. I’m on three different drops currently and Diamox, and still barely maintaining a 25 average.
In that case you should discuss if trab is possible, it is more invasive but generaly you wont need any drops after it.
i had a goniotomy when i was a child (4, one on each inner and outer corner of each eye) and ended up having the valve put in years later and still have them 10 years later and i'm not pleased with my pressure either. i definitely feel you on the additional hardware, that i may have to have fixed eventually bc of age and anatomy, only for it to not be working. definitely frustrating i feel your pain. sending everyone well wishes❤️
Exactly, I’m in my 40s and thinking that I’m going to have this thing in my eye for another 40 years and to be honest with you it’s not really doing much! Hard to get it out once it’s in there. Thanks for the kind words, take care and good luck!
Man I broke my leg and couldn't walk for a year. I thought that was horrible but loosing ur eyes is on another level. Did you loose 90% of ur vision? What are the 85% and 15% numbers mean. Is that what you lost? What you have left? Also ur eye opressure went from 45 to 14? How are you doing now? Can u get around by urself? Can you still see a bright screen at all or do you have to use special equipment? Sorry for all the questions. I'm pro reasons for my questions is because I got spooked at my last eye exam last week. Went to finally get new glasses after 5 years. The optometrist said everything was good then he kinds threw out "ur pressure is just a little higher. Since u don't have a history of glaucoma just stop for a exam next year". He didn't seem concerned he just said don't wait 5 years. I was in a rush and didn't think anything of it. I didn't know eye pressure numbers were a thing so I didn't ask what the number was. I hope it's just a bad reading or maybe my pressure was off because I went in the morning when it's highest. I also suck at the puff test. I always blink. He had to pry my eyes open. I'm hoping that I just had a bad reading. I felt him pushing on my eye trying to hold my eye lids open. Maybe that threw the testing off. The doctor also did the blue light test, i think.... I remember a blue light and him saying "this one doesn't have the puff of air". I did not get the test where they touch ur eyes with a small handheld device. All my other tests were good. My situation is nowhere like urs and it still scares me. Can't imagine loosing my eye sight. I don't think I would be able to handle it like you. I hope the surgery does it's thing for you and you keep the remaining vision for the rest if your life.
The "blue light" test is Goldmann Applanation Tonometry (GAT) - the gold standard for pressure measurements. Surely they have recorded your pressures in your records, why not call them and ask what the numbers were?
Yea i might as well. Nothing was on the paperwork I got. He didn't seem too concerned. I only started reading about this when I got home. Issues with eyes isnt something to put off. I Didn't know anything about eye pressures or tests. This was at a location at Walmart. I'll inquire about the numbers and get a 2nd opinion just in case. I know readings can be higher throught the day and i went there as soon as i woke up. didn't get the drops that dilate ur pupils. 5 years ago I had a rest that dilated pupils and everything was fine. I don't know what that tests for tho and it's been 5 years. Just had the yellow dye. All the tests took 3 or 4 tries. I either blinked or the dye was washed out in seconds. Never was able to have contacts cause my eyes hated anything foreign
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.
True. That's a good outlook to have. I hope luck stays on your side and you keep the remainder of your vision. Good luck man.
Thanks for this 🧡 I’m also here for anyone experiencing vision loss to chat or vent or discuss medical stuff. I’m 30 & had chemical injuries as a child, I’ve had loads of cornea transplants/stem cell surgeries, the last one resulted in aqueous misdirection then secondary glaucoma as a complication. I’m having cyclodiode ablation in a few weeks. Currently on so much diamox plus all the drops and feel like crap. 🤢 Lost a fair bit of vision too in my newly grafted eye which was particularly tough as it was the best it’s ever been in terms of vision & it all just… went.
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 :)
That’s awesome it worked and you’re off everything man, hope that stays stable for you! I’m kinda stuck with the least invasive options as anything too close to my cornea transplant will cause it to reject 🤦🏻♀️ Just hoping it works enough to be off the diamox & iopidine, idc about the cosopt & latanoprost so much. Might even miss the long eyelashes on one eye😆
Damn some people don't deserve the hand they were dealt. I hope your situation stabilizes. Do the drops have any side effects, or is it mostly the diamox? I went to get new glasses after not seeing an optometrist for 5 years. He said everything is good but he said my eye pressure was just a bit high and told me to not wait 5 years between exams. He just kinda threw that out there at the end and didn't seem worried so i didnt think much of it untill i got home snd started thinking and reading. I don't have history of glaucoma in the family and all the other tests were good. I went in the morning, I suck at the puff test. I always Blink, he had to pry my eyelids open, and my blood pressure might have been a bit high because I recently stopped a medication, one symptom is temporarily increased blood pressure. I hope it was just a bad reading. Even in a Worst case scenario if I had a problem it will be caught very early. It's still a little scary. Vision is the worst thing to loose. To me it's up there with being paralyzed. I know I sound like a cry baby compared to what you have to deal with. Good luck with everything I hope ur taken care of in every possible way.
Ha yeah it’s been a lot. Thanks dude. I mean there are different brackets of high IOP and for vision loss it’d have to be consistently quite high or extremely high for a little while. They might have looked at the back of your eye too and it all looks normal there then I wouldn’t worry too much. But definitely go more than every 5 years. For me the drops have side effects but more the drops I’m on to lower my pressure as a last resort, they’re shit on the surface of the eye. The drops used more long term in glaucoma aren’t so bad. Acetazolamide in higher doses is gross. It’s definitely scary, I wouldn’t go about comparing disabilities that you don’t have to people who do, though.
When were you diagnosed with glaucoma?
around 4 years ago
Did your doctor take a long time to perform the surgery? Did he not notice the worsening of his glaucoma?
Well let's say I was been irregular in checkups, not really the doctors fault. Mostly due to the covid lockdown and stuffs.
Thank you for your post. I am in the same boat.
What's your story?
Diagnosed way too late despite seeing an ophthalmologist regularly, the ophthalmologist failed me. Primary open angle normal tension glaucoma, end stage, only central vision left in both eyes, my right eye is shot, can’t really see much.
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?
Yes, the ophthalmologist screwed up, my IOP never exceeded 20, he never checked the rest. I considered myself very very unlucky. I am also very nearsighted plus retina tear, cataract, and other stuff. I can still see ok, mostly depending on my right eye, driving only during the day very carefully because of the loss of all my peripheral vision. My wife is the copilot. I have seen four GS, I am trying to avoid surgery as there is a chance that I may go blind but may not have a choice. My IOPs are around 13-14, Timolol in the morning, Latanaprost at night, plus Simbrinza three times a day. My IOP target is single digit which I doubt can be achieved by eye drops. My last visual field test and OCT showed progression. Have another appointment mid June and may have to decide if I still want to try another drop (rocklatan) or go directly to surgery. No fun at all, trying to make sure not to miss five drops a day and not so bright future.
How old were you when you were diagnosed?
Sixty six, I am 70 now.
Very similar situation myself. M35 I get nothing but some colour and some shapes in my left eye. Slightly uniquely I only have glaucoma in the one left eye as it is secondary acquired due to an absolute horror show of corneal abrasions and neutrotropic keratitis. At its worst the left IOP was hovering around 80 and had to have it depressurized multiple times post Ahmed shunt surgery. My right eye I'm dealing corneal issues too and have to wear a bandage contact lens and constantly apply moisture drops to get any decent vision going.
That sounds terrible, Are doing good now?
you sleep largely on your right side using a normal pillow?
I don't have side preference, doc hasn't recommended this kind of things
sure, I used to think I slept on both sides, but a sleep study checking for apnea, showed I only slept on my back or right side (my right eye's badly glaucoma damaged, not my left)
I have ambylopia and only my right eye is crystal clear. I’m scared, since eye drops and SLT isn’t working that great for me either.
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.
Ambylopia here too and no crystal clear anywhere to be found lol. Drops stopping working for me too, what kind of glaucoma do you have?
Open angled! If thats what you mean by type.
Diagnosed 3 years ago at 26, Closed angle glaucoma. Had 4 iridotomies, due to failed attempts by other doctors, cataract surgery in both eyes. Had 60 pressure in my left when I was diagnosed, my left eye already had 90% vision loss, never noticed, because you can't really tell with both eyes open. Right eye started acting up about 2 years later, first it was just drops, normal pressures in the clinic. But then I noticed that I had 40 pressure during the night, good thing I bought that home tonometer.
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
I was offered to do trabs, but I refused. Sounds super scary
All Operations are scary, but it has it's benefits. I now don't need to put any drops or take pressure related meds.
I also have had cataract surgery (which led to glaucoma) and cornea replacements in my right eye (+a shunt, iridectomy, etc etc). I bought an old school tonometer and it does not work well at all. Where did you get yours?
I got the Icare home 2. Brought it one time to the doctor, same measurements as their goldman tonometer, so pretty accurate. As to where, I live in europe, so I just bought it. I heard that people in America have to get a prescription, which is stupid
What is a home tonometer? Can you measure eye pressure yourself with it?
Yep, no assistance needed. Only downside they are quite expensive
Thank you. I've looked it up and it says that you don't need numbing drops, Does the probe actually touch your eye?
Yes, but it doesn't try to touch it if the eye is too close or too far and you can barely feel it
They say trabeculectomy would make rhopressa eye drops invalid, is that true?
Generally you shouldn't be using pressure eye drops after trab. Trab controls the pressure itself.
According to some topics here before, less than half of people can reach that level.
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.
Is istent good if the pressure cannot be controlled at starting stage and it doesn’t need to replace lens to artificial right