Diagnosed with normal tension glaucoma in October
Last week told that it is progressing and eye drops weren’t working
Now on monopost, trusopt and tiopex
Adviced that if no improvement in 6 weeks Will probably need surgery
Although this not discussed until my next appointment
Very anxious about all of this
Having 6 lots of drops morning and night and told I’m on maximum dose
it’s going to be a long 6 weeks and really anxious
I had normal tension glaucoma and gradually ended up on three types of drops, one of them three times a day. I’ve since then had a trabulectomy in both eyes. It is really scary to think about eye operations but they are really common and the consultants do them all the time. Like every operation there are always some risks, but the alternative is your eyesight getting progressively worse. Both of my operations worked fine and once you stop taking the post operative eye drops it’s brilliant to not have to worry about drops any more. Once you know if you need surgery and what type this forum is great for advice and answering queries.
I totally understand how you feel.An operation has been mentioned at every appt by my Consultant over the last 12 months.
My eye pressures are usually around 14 but my field of vision is deteriating when doing a VF.
I started using my first drops 7 yrs ago.
My real concern is that unfortunately things don't always go to plan and as already, I only have sight in one eye, the risk of losing my 20/20 (as I've been advised by my optician) vision in that good eye is too hard to comprehend..even though it is apparently reducing anyway? I can't see any difference but then if its gradual perhaps I wouldn't?
It's good to share on this site as I don't feel so alone with my diagnosis.
I wish you all the best and thankyou for sharing..
Hi Crafty-gran,
You have my sympathy-I'm in a similar position. It's very unsettling and anxiety making to be told your sight might be getting worse, but you'll have to sit with this for several weeks before you can find out more and talk yo the doctor about it. Waiting and uncertainty is so difficult.
I have normal tension glaucoma and have just had it confirmed that there is progression in my right eye but I have to do more visual fields tests and to wait till next appointment in June to have discussion about when trabeculectomy can be done.
Last week the anxiety about an operation was really getting to me so I rang Glaucoma UK helpline. They have a buddy system, whereby they can arrange for you to speak to a 'buddy' who has had the same treatment as you. I was given the number of a lady I could ring that evening. It was so helpful just to be able to chat for an hour to someone who understood, and it was very helpful and reassuring.
I wish you all the best with your ongoing treatment.
I've had trabeculectomies in both of my eyes in the last 18 months after drops started to fail controlling my pressures. I really wouldn't worry too much - the surgery won't be as bad as you expect. Unfortunately, the trabeculectomy on my right eye was too late, and I'd already lost a lot of vision in my right eye before the surgery (it happened very suddenly), but it stabilised my right eye, and has stopped the progression of the glaucoma in my left eye. I'm now completely drop-free and my pressures are fine in both eyes. Your anxiety is completely understandable, but really, having gone through it I'd try not to worry.
thank you
It’s good to know that I can chat to other people on here
I’m hoping these drops work for me
very sorry to hear that your glaucoma is progressing. Are there other combinations of drops you might try? I also have NTG and the progression that started in lockdown has been halted (so far) with a Ganfort and Simbrinza combo, one of each am and one pm.
My consultant has also said I’m in last option saloon as far as drops are concerned and next would be surgery but while I’m tolerating the drops he’s of the mind that surgery should wait. Might it be worth asking your consultant what he/she thinks about other drops?
Thank you
She has said that this is last option regarding drops
I was on saflutan since October
I’m hoping the drops work for me and I can avoid surgery
She never mentioned any other combination
So fingers crossed 🥰
I sympathise. I was in a similar position. Normal tension glaucoma, maximum drops, pressure in mid-teens and sight loss progressing. But at each consultation the decision to operate was deferred until the next time. In the end this just delayed the inevitable and resulted in further sight loss, so it actually came as a relief when a change in the consultant resulted in the decision to operate. I won’t pretend that the surgeries were anxiety-free, they weren’t, but they were successful and the pressures in both eyes came down to desired levels. One has since crept up slightly and I’m back on Tiopex in that eye as a precaution to keep it below the damaging pressure, but I’ve had no further sight loss in either eye since the operations and had a period using no eye drops at all. If I hadn’t had surgery the sight loss would have continued to progress, so I’m glad that I had it, despite its short-term stress.
Thank you
I had i-stents fitted last year to deal with high pressure. With hindsight, I should have asked for the operation a few years ago.
Hi, I had Preserflo surgery last November in my right eye, as I had become completely allergic to all eye drops and my pressure was rising. The surgery was arranged within a week which was good as I didn’t have long to think about it but it went well and has stopped my eyesight deteriorating and I am no longer on any drops and the pressure is at 10. The thought of the surgery was worse than actually having it and my surgeon was always very reassuring throughout. Try not to worry, I wish you well .
Hi Crafty-gran.
I have had glaucoma for approximately 10 years and have had 2 glaucoma surgeries and a cateract removed. It is completely normal to feel anxious as the eye is a very sensitive area. I was also on maximum drops prior to the surgery and like my fellow glaucoma sufferers, it was great to be drop free for a while. I am now waiting for further surgery as chronic eye inflammation caused the first surgery to fail after three years. Having been put back on maximum drops a few months ago, rising eye pressure and glaucoma progression, surgery has been scheduled.
Fingers crossed that you will not require surgery if the drops are successful. However, if it is required, you can always get support and information on this site and from Glaucoma UK. Good luck with the forthcoming appointment.
Many of the drops did not work for me...some are positively bad for us in other parts of the body too...anything beginning with A check out on Google! I was on Ganfort for a long time and worked well - then the hospital changed it to A....pressures shot up and of course only checked annually - if the Clinic running which it often wasn't. In the end I went for SLT and the surgeon had me put back on Ganfort each night as well...pressures camw down from around 30 immediately to low 20's and then further since to 12 and 14 average. Ask to try.
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