Newly diagnosed with closed angle glaucoma

[Efabear]

Good morning all. I was diagnosed with angle closure glaucoma in Nov. Long story short my appointment at eye hosp was deferred by nearly a year, due to COVID and by the time I was seen I had advanced disease in my Right eye and some impairment in left. Thankfully I still have fairly good vision in my left, but drops make my vision blurry etc and I'm struggling with glare in sunlight and am near on blind in the dark. As such I get myself into pickles at times. I am determined to stay positive and appreciate what I have, not what may happen, but it all feels a bit of a roller coster at the moment. Consultant told me yesterday he was very worried about me (pressure and sight wise) and risk of sight loss is high. Laser treatment failed and on max drops, about to start oral meds and now on list for surgery. I am going to get in touch with Glaucoma UK to request a buddy, but would love to know if there are folk in similar situations, who wouldn't mind being in touch. Sending you all positive vibes

[Hidden]

Hi Efabear, sorry to hear you have had such a time of it with your eyes . Thank goodness you are now on a list for surgery and hopefully your consultant has put you down as a priority . I was diagnosed with closed angle glaucoma just over 2 1/2 years ago, by then I had already lost a fair amount of vision in my right eye and a minimal amount in my left ,due to years of various opticians failing to recognise the fact I had glaucoma.

I wasn't a good candidate for SLT and eye drops weren't keeping my eye pressure down either so I had a trab in Feb last year and one seven weeks ago. So I can totally empathise with what you are going through and I agree it's a whole roller coaster of emotions.

I wear sunglasses when there's even a tiny bit of sunshine now and I too have dreadful night vision and use a head torch when out walking my dog in the dark .

Positives vibes to you as well. X

[Efabear in reply to Hidden]

Thank you. It's good to hear others experiences and in particular when things go okay. I'm still a bit shell shocked by it all, not least as I assumed that even though the sight loss was permanent, the glaucoma had been fixed by laser and would be managed effectively with the drops! I appreciate your warm words and support. Thank you

[frankthebank]

Hi Efabear, I can sympathize with you, as I myself am the victim of sight loss due to Covid, I have strong views on that I won't share on here, but what I really want to say is make sure that you no longer wait for appointments if you are heavily concerned call the hospital and get yourself an appointment with eye casualty; they have to see you that day or the next no matter what. I am sure now though you are getting regular appointments but I just give you that advice incase you feel you need an urgent appointment at any point.To help greatly with my sight loss I have glaucoma glasses, amber and green lense ones, also if I'm outside and it's sunny always wear sunglasses. But make sure you always buy top Quality wrap around shades. I got the green and ambers from the RNIB website, the both block out 90% of light and you see in just one colour, which helps correct vision enormously. The greens in particular I wear the most indoors and outside, they are great for watching TV etc and make my vision seem greatly improved and my eyes more relaxed / less light sensitive.

I hope any of this advice helped my friend because you remind me alot of myself, I too am on tablets, have had multiple drops and treatments, yet still in a battle to get it under control and I know how hard and stressfulI it all is. I wish you all the best

🙏

[Efabear in reply to frankthebank]

Thank you so much for your advise. I've long been warning of the impact of lockdown on lives, in so many ways. When I worked for Test and Trace I spoke to endless people who had cancer treatment cancelled time and time again and in essence the health service closed to anything but COVID and has never fully reoped either!? . Saying that I don't want to get stuck in a cycle of blame and you are right it's what happens now that we need to control. Funnily enough my appointment wasn't til March but I have been seen x 2 at eye casualty in the meantime and each time they've added new meds, so feel glad I did. I plan to speak to the RNIB so thanks for the heads up about the glasses. I have light variable lenses, but they don't help on their own. Really appreciate you taking the time to respond. I got swept along with diagnosis and treatment initially and assumed that would be that. Being forwarned is for armed so thank you.

[Lovemy2woofs]

It’s terrible how so many other conditions have not been addressed due to covid . I understood in 2020 as it was new, no vaccine and a worse variant , but as time moved on imo there were periods when more appointments could be given to other conditions and even more so with omicron variant and the relaxation of regulations.Totally understand back logs and NHS pressures etc.... but it was ALL covid and that’s something we will never recover from , so many have died or conditions worsened 😢

I do hope you get your surgery soon 🤞🏻 Wishing you all the best x

[Hastonian]

Please accept my sincerest good wishes. My glaucoma was first detected by my optician in September 2019, however due to the covid lockdown, I was not effectively treated until July 2021. By then I had partial loss of vision in my right eye. Since then the ganfort and Azopt drops seem to have stopped any further loss.

However, I am having to fight to get follow up appointments and my next one has been postponed for a month.

To be positive, at least you are now in the system, so to speak, and there are now many different options to treat the condition. I am sure your glaucoma will be stabilised.

I have found this forum very helpful and there is a wealth of knowledge and experience that can help to reduce feelings of anxiety and worry.

Stay strong and hopeful. You are not alone.

[Tshape2022]

Was diagnosed with advanced secondary open angle Glaucoma three MTHS ago ....know how you are feeling .

[Efabear in reply to Tshape2022]

Oh so sorry to hear that. Do you have much sight loss? I've just listened to the All you need to know about Glaucoma webinar. It was very interesting but when it comes to prognosis it's really hard to find out what the risks really are. As a rule every thing I've read states its rare to go blind if it's diagnosed early, but I can't find any evidence base which talks specifically about when it is already advanced when diagnosed and in my case proving tricky to treat effectively. My consultant warned me that I was a high risk of losing all sight in my worst eye. This doesn't worry me as what vision I have left isn't much use. However he also told me he's very worried about me as I also have some sight loss in good eye so I'm assuming that means I could well go blind! I'm not letting myself get angst about this possibility as want to make the best of life whilst I'm able, but do feel frustrated about the dearth of information out there as think even if it's news you don't want to hear access to such information is important. Take care

[Tshape2022 in reply to Efabear]

I have some sight loss ...Found the same as you not sure what the future holds ...think I will go blind .

[Tshape2022 in reply to Tshape2022]

Love your positive attitude .

[Efabear]

I have my dark moments, but do try hard to stay positive and keep busy. Its pretty tough though isn't it and I find it seeps into normal life and its hard to forget about, as there are reminders round every corner. Drops make my eyes sore and now itchy and my eyes get really tired which affects my stamina . Think it will take a while for us to adjust to our new normal and its still very early days. One day at a time me thinks.

[Tshape2022 in reply to Efabear]

Same here ..the drops certainly do impact on daily life and how we feel .Agree one day at a time .