How do I accept the news of some vision loss?

7weeks ago I received a diagnosis of glaucoma in both eyes. Am in a state of utter shock & worry. A healthy 59yr old woman traumatised & very low (am usually chirpy). High pressures of 30 since 2018 & failed many field tests in right eye. My comments since 2019 to my optician of greyness in my right eye & how murky & dark the field test was for my right eye seemed to be ignored by Specsavers. . Finally got a referral in Jan 2020 but hospital app for April 2020 cancelled due to COVID closing clinics. My diagnosis now shows 60% permanent vision loss in right eye. Left eye vision is good. Am on bimatoprost & timolol combined. Pressures last month down from 30 & 35 to 16 &19 but consultant wants to reduce them further. How do I cope with the shock of losing some vision permanently & my delayed treatment? Would really value anyone’s advice thank you.

[Nexxo]

Hi Bridfran. I am a 59 year old man who was diagnosed last January. I have glaucoma in both eyes with vision loss in my left. I have had high pressure in both eyes for about 10 years and had been referred to hospital on more than one occasion for checkups but was always told eyes were fine so last years diagnosis was a shock. I have a friend who also has high pressure but he has been on drops for years to control it. I was never offered drops until last year. To be honest like you I knew vision in my left eye was not as good as in my right, but I am just thankful that I was diagnosed and that hopefully with reducing the pressures in my eyes by being on drops has slowed down (or stopped) the rate of vision loss. I look at it as I still have vision and that there are people out there that have had glaucoma for many years and still have vision.

[Hidden in reply to Nexxo]

Many thanks Nexxo. Your situation over the last 10 years sounds similar to me. My very best wishes that your vision will also now be stabilised. Am trying to look at everything as glass is half full so thank you for the reminder-the way forward. I’m grieving I think for the deteriorating vision in my right & the frustration of not being treated earlier. All early days I suppose & just feeling so lonely & scared etc. Sleep deprivation due to worry since diagnosis plus lockdown hasn’t helped & I’ve been in a very bad, low place . You are reminding me of what I’ve got & hopefully will maintain so hopefully I’ll get my mo jo back

[Hidden]

Hi Bridfan, I am same age as you and my experiences are reasonably similar to yours. I too failed field test at 51 and nothing was ever mentioned during this or any further eye test. It took me changing opticians 2 years ago for glaucoma to be finally diagnosed and I have lost moderate vision in right eye and mild in left. NHS referral was going to take up to 28 weeks so I went private and was put on Ganfort. I've since had 2 cataract ops and recently a trabeculectomy, so no drops in right eye but ganfort and Simbrinza in left. My pressures fluctuate between 15 and 20 but recently mostly 20 and my consultant wants it constantly in early teens. I am fit and healthy too and I was in total shock ,kept crying and thinking of worse case scenario when first diagnosed. I was so cross at myself and felt my body had let me down. Seeing my private consultant for first time actually helped me, he was and is so calm and lovely, he listens, answers questions and explains everything so well. I have complete trust in him and I know he will do his best for me so that definitely helps me. For me I no longer focus on glaucoma it's in the background and I just carry on and don't think about it. This didn't happen overnight and I think you have to have time to process it all and that does take time. It's natural to feel shock, fear and a whole host of other emotions. I just don't think about vision I have lost or delayed treatment and I know in beginning that is probably impossible to do. I still have huge fear before every appointment and think I will be told the worst but that's it really.

You have now been diagnosed thankfully and are having treatment,

both of which are very important in keeping the vision you still have. The vast majority of glaucoma patients retain useful vision and I hold onto that thought.

It's ok not to be ok about it at moment it's a huge shock to your system and clearly a huge failing on the part of Specsavers optometrists, which is unforgivable.

Take care.

[Jennymary]

I've sent you a message

[Minety]

Hi. I was diagnosed when in my 50s and am now in my 70th year and have just passed my DVLA eye test. The fields in my right eye are poor but ok in the other eye which seems to be stable.

My advise is be strict with taking your eye drops and see your consultant regularly. It has worked for me. Remember that more than 90% of glaucoma sufferers retain practical eyesight so the odds are in your favour.

There is a useful guide on the glaucoma.co.uk website which you might find helpful.

[Vich81]

Hello. I’m so sorry you are having a tough time of it right now. It’s all still very raw and new to you so don’t give yourself too much of a hard time. You won’t always feel this way and I’ve yet to hear about anyone who is still chirpy having been just given a not to great health diagnosis. It’s easy for others to say but try to focus on the fact that you still have the vision you have. You say your left eye is still good, well that’s a positive. It’s a shame that more people aren’t aware of this silent disease until the damage has been done and I feel there is way to go on this and just how opticians can save our sight quicker rather than lengthy referals. All you can do right now is make sure you are strict with your drops and attend your appointments. If something doesn’t seem right or is taking too long then chase it up. I am 39 and I just don’t let myself go there with thinking that in years to come I might not be able to see at all. You will be back to your usual self in no time at all - just with a new regime in tow! Take care xx

[Canoeist]

I am sorry to hear what you have been through. Your eye pressure has come down really well.I would speak to your GP and tell your GP how you are feeling and it has been really difficult time with covid also .You have been through a very difficult time. I do hope in time you feel better in yourself .But you are letting people know how you feel.I am sure your GP will help you with feelings.I have had Worries but have spoken to my GP who has helped.I wish you all the best for the future.

[Hula48]

So sorry to hear of your experience. Some opticians are better than others, have more training and more equipment. I have had problems of auto-immune inflammation in 1 eye since the 1960s and was diagnosed finally with glaucoma in 1988, just before I was 40. It was explained to me as like tree-roots getting into a drain, the inflammation had blocked the drainage system in my eye. We keep making aqueous and it couldn't escape, so the eye enlarges and presses on the optic nerve, which results in sight loss. Drops helped for a few years, then an op was needed. That worked for many years, but it blocked again and I needed a tube in 2006. That has worked well. The other eye started up then and currently it is well-controlled by a trab. Of course I am on drops, 1 in each eye morning and night, all individual packs as I am now allergic to preservatives. My pressures have been pretty high at times.... way over 60.... (now about 13) tho I was still trotting about, working etc. You know you look rough when 14 year old boys you are teaching leap out of their seats and lead you to your chair, saying Sit down Miss, you're not looking well!

But I am still driving, still leading a pretty normal life. Keeping very calm, if possible, is definitely helpful, as is not bending down to do things.... bend the knees! Persuade someone else to do the heavy lifting. I am very lucky indeed.... if I had lost the visual field on the outer edge I'd not be able to drive and I'm not on a bus-route, but I lost it near the nose and the other eye can cover. It is horrid, frightening, having something like this, but I try to keep counting blessings. Like 14 year old boys! Find a way to do what you need to do.... I see it almost as outwitting an evil little sprite that is trying to bring me down. Yes, I need to phone a friend sometimes to help me, or re-organise my kitchen, get a stronger bulb for my lamp, drive to the supermarket when I won't need headlights.... I have lost a lot of hearing now too (hereditary) so there's a lot of compromising. As I said somewhere else, way back, Kiki Dee sang in I Got The Music In Me, When something gets in my way I go round it, and that is what I try to do. I'm 72, had probs since I was 20, it's Me versus glaucoma and I'm not going without a fight! Good luck!

[Hidden]

I can fully relate to the feeling of being let down by unnecessarily delayed treatment. I was rung up by the hospital a month before covid and told there were no ophthalmologists in my town so they had to cancel my appointment. I could have gone to another region though and feel really gullible now for just accepting what the person on the phone said and not going elsewhere or getting private health insurance and going to a private clinic. It's a really bitter pill to swallow as I would be 100 times better off now had I done so. One thing that did help me through it all was seeing a mindfulness coach. I would recommend doing this is you can afford it or else going on a course. Living in the past is very destructive but it's not easy ay, especially with this condition.