Hi went for first appointment after diagnosis yesterday. So stressed. Lovely doctor though. Obviously asked would I go blind didn’t get yes or no answer he just said we have to keep pressures under control. Pressures were 20 and 24 so I wasn’t happy. He’s gave me a combination drop of Lantanprost and Timodol to take one drop each eye every morning. I also have a thin optic nerve that scared me. He said your not a glaucoma suspect you don’t have early onset gluacoma you have gluacoma I said the optician said it was caught early and he said well we are doing something about it now. He didn’t do a visual field test because my one before in December was fine. I kept asking have you seen people go blind then he said yes but he would because it’s his job also asked if people my age keep there vision I’m 53 all through their life he said yes. I have to go back in 2 months I’m so scared I will go blind
First Appointment after Diagnosis : Hi went for... - Glaucoma UK
First Appointment after Diagnosis
Oh Julie I understand how scared you are and telling you not to be is a waste of time as it is scary but at some point you will find a way making it less scary. You can only think just now of losing your sight and it's when you can put that to the back of your mind for the majority of the time you won't be as continually scared but it takes time
On positive side you saw a consultant, you know your pressures and he's going to do his best to lower those pressures. You also said he was lovely which is a big plus as you need a consultant you can believe in.
I can empathise with being told you have a thin optic nerve as I was told the same and the brain seems to focus at least initially on the most negative aspects of what we are told. He will have seen people lose their sight as it is part of the his job but he will have seen many more keep their sight and he will I'm sure do his best for you.
I was thinking of you yesterday and wondering how you had got on. You are seeing him in 8 weeks and you will know then how well hopefully the drops are working.
I personally stopped being so scared once I had been proactive, seen my private consultant and trusted him. I am still terrified the night before and day of any check up and I do still always expect the worst but apart from that I just live my life and don't focus on something that hopefully will never happen. I workout everyday and that and walking miles with my dog are my happy places.
Take care Julie.
Thankyou so much for a lovely message. Did you say you have open angle and and what age and for how long. Is the thinning of the optic nerve make gluacoma progress quicker I didn’t ask him that. I can’t bear this x
Yes open angle and diagnosed about 20 months ago at age 57. I don't know the impact of thinning optic nerve has on progress. Start writing your unanswered questions down now and take them with you next time.
It's the not knowing that is definitely the worst. You were diagnosed early which is a positive , you are seeing a consultant and being treated also positives. One you see your pressures lowering and stabilising that hopefully will make you less anxious about it all.
3 major factors in losing your sight is late diagnosis, lack of compliance with your drop regime and mismanagement of treatment.You were diagnosed early, you will take your drops of that I have no doubt and you are now seeing a specialist . You don't tick any of those boxes.
You are human and uncertainty makes us scared, if you were blase about this it would be very odd. In time you really will find a way of coping, it's all still new and you have just seen consultant. I have in the past and sometimes still do feel the way you do. X
Thankyou so much for this message I’m definitely not going to miss drops or appointments. How are things with yourself x
I believe you will go to every appointment, take your drops and follow his advice and hopefully that will give you a favourable outcome.
Thanks for asking,I had a positive hospital check up this week, my ocular massage worked and my pressure in right eye is now 14. I have thick corneas which gives false high readings so my pressure will be lower than that . Don't need to see consultant for another 6 weeks when he is going to put me on waiting list for trab in left eye as pressure was 21. I don't really want another op but it's necessary and better than the possible outcome without it. Also I have been through it once so I now know what to expect.
Look after yourself x
Glad everything went ok. Keep in touch on here and thanks for the messages x
Thank you. You keep in touch too x
Hi I was reading your reply to Julie and hope you don’t mind me asking you a question. My pressures are 27 and 24, however my consultant has never mentioned surgery only drops. Is there a reason for this or should I ask my consultant during my visit next week? I’ve been treated for glaucoma for the past twenty years and now pressures have significantly increased. Any advice appreciated x
Hi Sunshine8888, I'm happy to answer your question, it's lovely that everyone is so supportive.
My pressures were 27 when diagnosed ,which wasn't quite 2 years ago and by then I already had moderate sight loss in right eye and mild in left. The waiting list for NHS referral was approximately 28 weeks and I therefore decided to go private. By doing this I obviously was able to speed up the entire process which was the right choice for me.
My eyes on drops were fluctuating between 15 and 20 with vision loss still occuring, maybe although your pressures are higher your field tests are stable whereas mine weren't. From what I can gather a trabeculectomy is more likely an option further down the line for most people when all other options have been explored. It certainly would be worth asking your consultant about though.
I had cataract surgery on both eyes 18 months ago, not to improve my vision but to aid drainage but unfortunately this didn't work. My drops are strongest I can be on apparently and I am not a suitable candidate for SLT so surgery appeared to be the only option with me. Fingers crossed it appears to be working.
It's fortunate you have an appointment next week , hope it goes well and yes if I was you I would be enquiring if surgery is an option.
Your consultant is right, he/she can't predict which of their patients will lose their vision, but one thing to remember is that 96 per cent of people who are registered blind have some degree of vision, my mum lived all her 88yrs with only one eye, she used to knit and watch TV at the same time, it never stopped her living a full life, I've lost vision in one eye but it doesn't stop me doing what I want, if you're looking things up on the Internet, I'd try and stop doing that because that's general stuff not personalised for you, if your consultant was concerned you'd be seen sooner than 2 months, take that as a, positive, and get on with your life and try to put eye problems to the back of your mind (easier said than done).
Thankyou I know exactly what you mean about the internet just can’t help but will stop. Thankyou for messaging me xx
Hi JulieBookworm1968!I just want to send my support and to backup what Witchue346 and Jennymary have said. It’s so frightening isn’t it? My diagnosis was 3 years ago now but I remember so well the feelings you are expressing of shock, anxiety and just fear for the future. It will get easier and you will manage to put it towards the back of your mind in time, though it may pop up each time you have an appointment or something changes. Listen to your consultant, take your drops without fail and as advised, and just stay as fit and healthy as you can. Eat healthy. Try to manage that anxiety too. I found daily long dog walks, beekeeping and practising a little mindfulness really helped me. It is tough I know but try to live in the now until your next appointment. Thinking of you and I’m here if you need support. Take care!
Hi Julie like everyone who has replied we are all here for you and yes each time an appointment comes up you feel anxious and nervous. Even though I’ve been going twenty years I’m nervous about my appointment next week. My pressures have gone up significantly 27 left and 24 right ( my right eye last time was 10) so really hoping new drops will have had an impact. If not I know the consultant will come up with another way forward. This is an amazing community, it’s so great knowing there are people her who understand. So Julie be reassured and whenever you want or need support know it’s here. Take care xx
Thankyou so much for such a lovely message. You are right everyone is so nice and supportive on here. May I ask how long you have had glaucoma and which type how old are you and are you just on drops.I’m sorry your pressure went up. Do you still drive x
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