I have have normal tension glaucoma brought about from Lasik surgery which gave me very thin corneas. Though my IOPs range from 10-15, I would need an IOP as low as possible, however, I am frightened of severe hypotony. I live in the U.S. and the surgeons don't go into detail as much as those in the UK as far as the risks involved with getting to such a low IOP. Has anyone had success with getting their IOPs to single digits? And has your vision loss been halted? I have done everything since being diagnosed in 2012 at age 57 (with "moderate" now "severe" glaucoma). I was misdiagnosed because my IOPs were always very low and the Goldman Tonometers they use to measure eye pressures are not accurate for those of use with Lasiked Corneas. I have also addressed things like mild sleep apnea and blood pressure dipping at night, by sleeping with my head raised, since blood flow is so important. I am currently on 3 drops, which keep my IOPs almost the same as they were 9 years ago. I don't even know what my baseline IOPs are since they have been the same for the past 7 yrs and since I have very very thin corneas, the only option is to get to a "single" digit though my last 2 surgeons refuse to give me a "target" number. I think the surgeons wouldn't do a Trab on me at age 57 because I scar easily and my IOPs were so low to begin with. I am a member of Fiteyes which is an online community for those who measure their own eye pressures so I know my IOPs. It has come to the point where a Trab. is the only option, (though I have tried advocating for a MIGs) so I am trying to find those who have had super low IOPs but still had a successful Trab outcome to get to single digits. I know the skill of the surgeon doesn't guarantee a successful outcome since we all heal differently. Just looking for some reassurance. Thanks!
Success with IOPs of 6-8 with a trabeculectomy? - Glaucoma UK
Success with IOPs of 6-8 with a trabeculectomy?
Hi . Though I am not a doctor to give an opinion on the single digit IOP, but my consultant has told me it is not really desirable to lower the IOP to this low.He said you should aim to 10 as an optimal target.
Please read this as just an information and of course the best option is to ask your consultant.
Regards
Hi, also have thin corneas due to lasik surgery, I think I was told at the beginning of my diagnosis that the pressure reading has to be adjusted to give a corrected eye pressure reading, so don’t know if I’m now told the readings before or after adjustment. After my trab pressures went high but then 3 months later very low but now 6/8 but optician told me they wouldn’t like it any lower but my consultant never seems concerned . I have only had a trab in one eye as my consultant will not do it on my other eye until I start to lose some vision, but did have an I stent to help with pressure, that eye has a pressure reading of around 16, but still use 2drops in that eye. Happy to answer any more questions but can only give advice on my experiences here in the UK.
Just checking in to see how is the vision in your trab eye? Is your eye more light sensitive or dry? Are your pressures still in the single digits? And more importantly, has your vision loss stopped in that eye with no drops? Also, just curious which stent you have on your other eye? Sorry for all the questions. I have severe stage so I'll be facing some sort off surgery soon.. Thanks!
Trab eye——think I may have lost a little more vision since trab , but my field tests are not consistent so don’t really know, but did loose quite a bit in the year before trab, it is very dry and very light sensitive, have to wear sunglasses or a sun hat on a sunny day, pressure is around 8, but still no glaucoma drops in that eye. I had I STENT put in the other eye, also dry and light sensitive but not to the same degree as trab eye.
Which op are you thinking of having?
Don’t worry about asking questions happy to help.
I feel like I’ve lost more sight in my eye since Trab. I had the Trab in June & it’s only recently I think my vision has got worse but then I think I might be imagining it 🙄. Then I start panicking that I’m going blind. If only there was a way we could check our eye pressure at home. Mind you, that would probably make me worse! I’d be forever on the phone to my consultant’s secretary and she already shouts at me 😂.
Do you know what your current IOPs are? There is a device called the Icare with which you can measure your pressures, but that doesn't work for me since I have very thin corneas and they give falsely low readings (why I was misdiagnosed for many years). Are you still on drops? There's a U.S. group called Fiteyes.com of folks who use self-tonometry to measure their pressures. They are very involved in their disease. What were pressures prior to your surgery? And how long was your recovery from your Trab? I know how you feel...this disease is the worst.
I only have it in one eye at the moment thank goodness (although I panic all the time that it’s gone to my other eye 🙄). When I was diagnosed the pressure was 44 and that was because my neurologist- who I was seeing for chronic migraines referred me. I was by then having a permanent greyed out spot in my central vision. I was on cosopt (a combination of Timolol and something else which I have forgotten!) and Travoprost and then pre-op he put me on Diamox 250mg a day the lowest my pressure got down to was 20. Post-op it went down to 8 and then settled at 10. I haven’t seen him since July so don’t know what is going on now & I think that’s why I’m worrying. I’m not on any drops for pressure now, just once a day steroid drops for post-op swelling to stop healing so fast. I try to stay positive & think that at least Glaucoma isn’t life threatening. I think of poor people with diseases like motor neurone disease and people with terminal cancer & try to feel grateful for the sight I still do have. I find if I go on too many sites & read a lot about Glaucoma I get obsessed with it & start convincing myself I’ll go blind. So I try to just forget about it & get on with life. My mum had late diagnosed Glaucoma & lost her sight but managed to live a full life right up until the end of her life.
Hi, I wouldn't worry about pressures going as low as 8. Lower than that you might get a problem. I was similar to you but was losing sight with drops and pressures around 17. I've had a trab in both eyes in the last 2 years and, in fact, had the first one revised this year after only 18 months because the pressure had gone up to 17 again, with drops. Apparently I heal the channels up too quickly! My consultant aims for IOP 8-9. The second eye trab was going up and the consultant put me on one drop in that eye and it has stayed at 10 for the last 6 months. I attend the UK's specialist eye hospital in London was I know I'm getting the best treatment. Am due to attend hospital early November so hopefully things are working better.
Hello bessygo,
If someone has normal pressure glaucoma it is important to get the eye pressure (IOP) as low as possible, even into single digits. For other types of glaucoma such as primary open angle glaucoma and primary angle closure glaucoma a single digit IOP would be too low but for your type it isnt. if eye drops dont work in bringing the IOP down as well as hoped they have to look at other options which in your case is a trabeculectomy. MIGS, although good in reducing eye pressure does not work in lowering the IOP enough for someone with NTG. Trabs have been around for over 50 years and is still classed as the gold standard for people with glaucoma in bringing the IOP down. Your consultant would not be able to give you a target figure as every person with glaucoma is different, so one IOP may be suitable for one person but not another.
Hi bessygoI eventually had normal tension glaucoma diagnosed in my late 20s but only had 5% of my sight left. My IOPs had been 15 - 20.
I had bilateral trabs in 1992 and after very frequent field tests and the advice of Professor Roger Hitchings (who I consulted privately) my target IOPs were set at below 10 and I was put on 3 different types of drops (twice a day) and Diamox SR capsules 250mg twice a day.
My medication has remained at 3 different types of drops and diamox twice a day for 29 years. At 65yrs old, my IOPs have been kept at below 10 99.9% of the time and I have not lost any more sight. I still have 5%. In the 90s I had IOPs of 6-8 but they have steadily increased as I get older. However, I still have IOPs of 7 - 10 and I never suffered any ill effects of low IOPs
My visual acuity has been good most of my life and has only deteriorated with age ie glasses for reading, watching TV etc. Of course, with only 5% of vision, I am not allowed to drive.
I too monitor my IOPs at home and I think this is vital while trying to keep IOPs to a safe level. Information is power.
I hope this is of some help to you.
Thank you so much for sharing your story. I never heard of BiLateral Trabs.
Have you ever had to have bleb revisions to your Trabs?
I, too, am 66 years old, and am highly myopic (why I had Lasik) so I have many many floaters and PVD, as well as cornea haze from years of wearing contacts lenses prior to Lasik. Sometimes I feel like I'm looking though water.
Also, after having the Trabs, did you develop Cataracts and subsequently have them removed?
Did you develop dry eye and more light sensitivity after yourTrabs?
I am surprised you are still on drops. I too, am on 3 drops, without preservatives: here in the States I use Xelpros at night, Preservative Free Dorzolamide, and a drop called Glanatec, which is more gentle than Rhopressa, which I order from Japan).
I scar like crazy. I had a Cypass implant put in my right eye in 2018 , which scarred over after just 5 months, and it wasn't inserted correctly so it was removed (and the Cypass was subsequently recalled here in the US because it can cause cornea cell loss which I also have). Another reason why I have cornea haze.
That year I saw a new surgeon who was going to do a Trab with an Express Mini-Shunt, but walked that back when I began Rhopressa and it lowered my IOPs.
I also sleep on my back with my head raised (I have nocturnal blood pressure dipping and also very mild sleep apnea...all this I addressed and my Visual Fields and vision stopped progressing for the past couple of years until lately.)
But I have developed a Cataract in my Left Eye and that is my "good eye".
The GS who was monitoring me for 3 years is retiring so I am now on to a new surgeon who only does the Istent, Xen Gel and Trabs. He is "old school".
His favorite procedure is the Trab... when I asked about other less invasive procedures such as the OMNI or ABiC which can be done with Cataract Surgery, he said, "why not get a Trab, get off drops and be done with it?" As if it were all a "slam dunk". It is not just about the skill of the surgeon...I don't doubt that; it is how we heal.
I am terrified of the post-op after this procedure. I know that blurriness can last for weeks. I live in Florida where there are many many patients and the drs line up patients like lemmings, to operate on them, one after another.
We don't have "eye hospitals" here like Moorfields.
You are lucky to have the NHS
I call the medical care in the US, the Health$$care system, since it is profit driven.
I so appreciate your feedback.
Hi peg yes information is power im still struggling with pressure despite being on two drops three times a day I've had short spells on diamox low dose sorts me out docs here seem. Reluctant to perscripe long term
Hi Daytripper 56Sorry to hear about your continuing problems.
Long-term use of Diamox is a very personal thing and your Doc is the best person to judge if it is likely to help in your case.
Best to get all the info you can for when you next see your Doc so you can have a fully informed discussion with him/her. IGA is a great source for info. At least then you can know why he is doing what he is doing for you.
ATB
Hi BessygoYou sound as if you have had, and are having a bad time of it. I hope it all works out OK for you.
As to the questions you asked:
I have never had my Trabs revised. I have generally taken the approach that if my glaucoma is basically stable, I leave well alone. So, although the trabs stopped working sometime ago I did not have them tinkered with as all the medication and my change in lifestyle (I retired very early) my IOPs were behaving and I wasn't losing anymore sight.
I do have 'baby' cataracts but they are very slow growing and I haven't had anything done about them as They do not significantly affect my life. Light sensitivity is much worse since having glaucoma but having only 5% of my sight left helps with that. In fact, it is the dark or dull light conditions that cause me greatest problems as insufficient light reaches my retina for me to see.
My drops are timolol, brimonidine and travaprost together with diamox. Because of my insistence about not changing things if my IOPs are under control, I have always declined any change of drop. On the whole, my consultants have agreed with me.
I too sleep on my back and I have a raised bed (my Hubby also needs a raised bed as he has digestive problems).
I agree with you that our NHS is wonderful though I don't use it now for my glaucoma, just everything else. My trabs were done on the NHS and I have no complaints about them at all. As Trish, the Glaucoma UK admin said above, Trabs are still the gold standard for lowering IOPs and they certainly did the trick for me. I didn't find the ops bad at all. I remeber being surprised that I could have ops and feel no pain at all (I am terrified of pain). I was blurry for 4/5 weeks afterwards and had to stay off work as I worked in an office, but it gradually cleared.
I'm sorry you're going through such a worrying time. While everyone is different, I hope you can take some hope from me in that my IOPs have been kept well in single figures for 30 years.
Best of luck Bessygo
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