I went for my checkup at the hospital 3rd one since diagnosis in December last year. When first diagnosed I was put on Lantanprost my pressures were 24 and 28 but visual field was 100%. 2nd appointment in March pressure was 20 and 24 but they didn’t perform a visual field but was took off of Lantanprost and put on a combination drop called Fixapost. Went yesterday and visual field was 100% but pressures were 25 and 30. I was offered laser which I’m going to have in about 6 weeks. I came back feeling upbeat because they say having thick corneas can make your pressure reading higher with the puff test. Don’t know why but I’m feeling really down today. Why didn’t they do anything about my pressures yesterday surely that’s going to damage my visual field. Sorry for the whinge especially to my lovely friends on here Hidden Wales99 Sunshine88888888 and valfrance . You have really helped me and I’m whinging. Sorry xxx
Still worried : I went for my checkup at the... - Glaucoma UK
Still worried
One thing to remember, if he hospital felt you needed more drops they'd have given them to you, in your situation I'd take the attitude that if the hospital aren't worried then I'm not going to sit at home worrying (I've had years of practice though)
Jennymary ahh Thankyou I know deep down that’s how I should feel I think it was because I had good news on visual field and bad news on pressures but some people then say some eyes can take more pressure. Also I didn’t ask him but he didn’t say if there was any other damage sorry I’m all gloomy today x
It’s great you are getting seen and already on drops as so many are waiting for appts , so that’s encouraging for your situation , seems like your ones are proactive. Your VF are still good , that’s great, pressures can fluctuate daily and having thick corneas can giver higher readings ., they are now suggesting laser instead of more drops, so sounds like they are taking care of you . Try not to worry, hard I know.
I’m still waiting for my laser , 5 weeks tomorrow .
I keep getting headaches , not bad , but think it might be the weather , or could be my eyes . Who knows .
I feel in limbo really , as waiting for date for laser , only time will tell if irridotomy will work for me , and I’m now scared of putting myself in situations where I can get a closure attack.
I’ve had no advice about that other than go to A and E , so relying on my own research . So at the moment not going to cinema and thinking about situations where my pupils might dilate .
We are all here for each other x
Lovemy2woofs Thankyou for you message. It’s not right that people are having to wait for appointments. You have angle closure don’t you I don’t know much about sorry. He gave me about a 6 week window. It’s so difficult not to worry. Also worried that I’m to young for laser and how long it will last I was thinking I would be on drops for a longer before any other procedure but they are the experts.just think if laser only lasts a year then its not long is it not sure how long it does last do you. I wonder how much pressure can go up with the puff test and thick corneas they never explain stuff like that do they or I forget to ask. Hopefully your headaches are down to the weather. Thankyou for your kind message xx
I had to ask, he said about 6 weeks but to check with reception, but when I asked it was a lady just covering the desk so she didn’t know . However the form he gave me to hand in a two week box was ticked , so clearly even at that stage delays . If it wasn’t for me having yearly checks for diabetic retinopathy where pupils are dilated he said I would have been monitored , but that puts me at risk of angle closure so recommends laser ..
I too have thick corneas , like you.
I have narrow angles or as he likes to call them occludable but no Glaucoma , ( not yet anyway) though on my letter he did for me to take home I noticed disc was 0.6 on both .
Narrow Angles are basically where there is less space so restricted drainage if angles close more , pressures rises quickly and can cause vision loss very quickly ..
If you have an angle attack you have to get seen ASAP.
They are graded, some have more narrow angles than others .
You can have narrow angles or narrow angle Glaucoma .
I think I read somewhere that laser has better results if done on a “ virgin’ eye rather than ones that have been long term users of drops .
I think it’s just what works for you , seems like our journeys are a mix of things working and then not and onto the next thing .its not easy is it ?
Would be much easier if it was one treatment that works for all.
Take care xx
Lovemy2woofs your definitely right would be easier if one size fits all. My disc is 0.8 and 0.7 which really scares me not that he mentioned at all only on a letter he sent to my doctor which I got a copy of and then I google and that can be normal and within the range for some people scary isn’t it. I was told by valfrance laser was better if you havnt been on drops long so fingers crossed xx
Hi Julie, sorry to hear how you’re feeling, probably just feeling the stress full on from yesterday. My pressures have been up to 29 recently and neither the optician or hospital were overly concerned about it for a short term, like you, I feel I need it reduced now, feels like walking round with a timebomb so I get your worry. Was it a puffer test they used? If so, they can be a few notches higher, mine usually done at the back of the eye. Anyway, just feel sorry for you and hope you’re ok. You could maybe get pressure checked at your optician between now and your treatment if you’re worried it’s going higher. I’m sure it won’t though x
A Never apologise. I agree with Jennymary I’m starting to be more philosophical & think that if the consultant isn’t concerned then I’m not going to worry so much. Easier said than done I have had several meltdowns in the past few days following my Trab. Really though, I’m sure they would have put you on more drops if they were concerned. Try not to brood on it, again, easier said than done I know. Hang in there lovely, we got this. 😊 xx
Wales99 thankyou so much. How are you doing after the trab xx
I’m up & down with it. I’m still getting headaches which is a worry. I’ve got a Drs Appointment tomorrow so will see what they say. Xx
Oh bless you Wales99 i hope everything goes ok for you tomorrow xxx
Drs as in GP or actual consultant? It's a worrying time anyway after trab and it does take a lot out of you but your headaches are definitely not helping. I wouldn't be able to wait till next clinic appointment either. Good luck tomorrow and hope doctor can actually shed some light on actual cause of headaches x
It’s actually a pharmacist appointment at the GP. It’s all they could offer me. Honestly flipping Covid has caused so many problems. Well my consultant told me to contact my GP so that’s what I’ve done. We’ll see 🙄.
Wales99 good luck today. I no what you mean flipping Covid. Xx
Thanks hon. Not sure what a pharmacist can do but at least they know about meds & also it’s a start. I did have my second Covid jab last week- got horrible side effects from the first one but nothing from this one or so I thought- I guess it could be that because I got a horrible headache after the first one. With the benefit of hindsight maybe it wasn’t such a good idea to have it a week after surgery 🙄. It’s a telephone appointment I’ve got so we’ll see. Have a good day xx
It's better than nothing but it's certainly not ideal. Fingers crossed for you. You can't keep going on with these headaches, someone needs to do something for you x
For goodness sake it's hardly ideal but better than nothing I guess. Covid aargh !!! I hope he can actually do something as your headaches need dealt with. So annoying and frustrating and I know well how blinking debilitating a headache can be. Fingers crossed for appointment then x
Aargh I've sent you 2 replies as first one disappeared and so I did another one and then both appeared. Good start to my day ha ha obviously I am going to be dafter than usual 🤔 x
😂. I just said to Julie there’s so many different threads going on I’m getting a bit overwhelmed 😂 xx
It's lovely so many people care and genuinely do mean it. Don't get too overwhelmed as you've still to try and formulate proper sentences to your pharmacist. X
Oh absolutely! 😂. I’m not holding out a lot of hope tbh for this appointment but at least I can report back to my consultant that I’ve done what he told me. 😂😂. X
True you've ticked that box but it's not enough in my opinion . It's your eyesight not something inconsequential. Makes me cross actually x
Well the pharmacist was very helpful & sympathetic. She agreed with me that it would be best to wait until I’d seen the consultant before I do anything about the headaches in case it is eye related which I definitely think it is. She spoke to the GP who has given me an appointment for 7th as they deemed it not urgent which is after I see the consultant so I should hopefully know more by then. I do feel better for having spoken to someone with medical knowledge- at least I have a way forward. The pharmacist said that the GP may well have a conversation with my consultant so hopefully they will do that too. Xx
That's good you feel a bit better after speaking to pharmacist and thank goodness she was helpful and sympathetic it makes a difference. I do hope your GP does speak to your consultant a bit of liaising between them can only be a positive and at least you do have an appointment. I still think your consultant should see you but that's just my opinion and he is well qualified blah blah blah but a bit of reassurance goes a long way. X
Ha ha! Yes I know what you mean. I was a bit cross too but then I do think that he has seen me every time in the past when I ring. You do just have to trust them unfortunately. I do have faith in him. It’s no excuse but even though it’s private he is inundated- his secretary showed me his appointments list at my last appointment and just for that day it was 2.5 sheets of A4. People are being driven to go private because the NHS is such a mess. If things change or get worse I will ring again but hopefully they won’t. Enjoy the rest of your day. We have rain in the South East but I don’t mind - I like it! 😊 xx
Yes you do have faith in him which is really important and I'm sure if he remotely thought you were an urgent case he would see you. It's very wrong so many people are having to go private and the sad truth there are so many who cannot afford to and they are being left behind.
Hopefully your headaches will improve, I hate having a headache it makes me so bad tempered and I feel so sorry for myself.
I'm just going to meet a friend and go for a walk in the fields and possibly stop for ice cream . Enjoy the rain you non sun worshipper 🌧️x
😂 I’m a creature of the North - I like the cold and dark - It’s the Celt in me! 😂😂. Yes his secretary said to me that a lot of the older patients who go to him for injections for macular degeneration are raiding their pensions to pay for it. It really is wrong. I am very, very lucky that I get it through work.
I like crisp cold with winter sunshine but also love summer sunshine just not to sit in and there has to be a breeze but I'm not fussy at all. 😂. I should like cold and dark as Celt through and through but here cold and dark also means wind and rain 😣.You definitely are fortunate as goodness knows how long it might have taken you to even see a consultant never mind have Trab on NHS. I feel so lucky that I now see my private consultant on NHS but I certainly feel for others not in such a fortunate position. It's very sad and it's not just caused by covid, up here the waiting lists were horrific long before. X
Yes same here. It’s really appalling but the NHS has been in a bad way most of my life - certainly my adult life. My daughter nearly died when she was born but that’s another long story. I don’t really know what the answer is. I’m only half Welsh but feel more Welsh than English- when I go to Wales which I do as often as I can, I feel like I’ve come home. Xx
Omg that's awful and gives me the shivers just thinking about it. Unfortunately I don't think things are going to get better with NHS anytime soon .More funding would help at a guess.
It's funny I've not lived in Stirling since I was 7 years old but I always count that as home. X
I know how you feel my lovely, my pressures have been up and down like a yo-yo since I had my trab. It’s such a worry I know. But as others have said, if your fields are good there has been no damage and everyones pressures vary all the time, bit like blood pressure readings. When I go to the clinic my pressures done by the nurse are always lower than the consultant’s, as they have different machines and his are more accurate, therefore give higher readings. Try to relax at the weekend and forget about this horrible disease xxx
Hi Redshoes15 thankyou for your message. It is a worry and will all try our hardest not to stress because obviously it makes our pressures worse. I’m feeling better today and have been told by doctors that the puff test for pressures always reads higher and I have thick corneas as well I don’t know how much higher it can read I just wish they would test pressures the other way instead. Also like you say no visual field loss so that’s good. He didn’t say anything else which I did worry but I guess he would B of said otherwise. How are things with you which gluacoma have you got if you don’t mind me asking x
I have primary open angle glaucoma, diagnosed when I was 55. I’m now 71 and have been on drops 16 years, which seem to have stopped working enough now, hence the need for a trab. Like you I worry constantly about the pressures. My hospital check up was delayed 6 months during which time the pressures had been going up and caused some optic nerve damage, which was very distressing. But as you say we must all try to get on with it, can’t do a lot else can we!! Take care of yourself this weekend xx
Redshoes15 Thankyou. It’s amazing you have been on drops that long though. I guess I was hoping the same but now having laser but have no visual field damage and he didn’t mention optic nerve I guess he would if if I did. So bad that hospital appointments are delayed for so long. I just realised you were chatting to Wales99 and I butted know I do apologise to you both. Xx
Not at all, it was nice to hear from you! Sorry you are feeling so low at the moment. We all have good and bad days, but this forum is definitely a help as we all understand what it’s like going through this. xx
😂. IT’s fine! There’s so many different threads going on now - I’m getting a bit overwhelmed 😂 xx
Hi Julie how are you doing today? I think glaucoma is like a roller coaster ,some ups but a lot more downs !!!! I think once you have had the high of no vision loss then it's the low of the pressures,SLT and what it entails, would drops be better for the moment etc. I think glaucoma brains just go round and round like wee hamster wheels churning out all possible ramifications and consequences of all treatment options. Some people can get quite a few years out of SLT and you have only been on drops for a few months so you really are an ideal candidate for successful outcome. I know none of this stops the worry but I hope today is a better day for you x
Morning Hidden im feeling a bit better today thinking now they are offering it to me rather than keeping on drops in case they carry not dropping my pressures so trying to think of it that way. It definitely is a rollercoaster it’s not nice. How are you the weather here is awful. Xx
I'm glad you in better place and I agree with your way of thinking today.I do think your consultant is doing what he thinks is best for you and I personally. would rather have a procedure than take drops . The weather here is absolutely scorching and I've just been sitting in the sunshine cuddling a Cavasu puppy so you don't get much better than that 😁🐕. So life today is lovely.
Not often our weather is better than down South !!! It's to be lovely again tomorrow too 😱☀️ x
Thankyou Hidden i do feel better. I’ve just received a letter now asking me to go in on the 27th July for a consultation and possible laser. I’m slightly confused now as I thought I was getting laser. I’m going to try not to stress. Oh how lovely cuddling a puppy. Can’t believe you have scorching weather definitely doesn’t happen often. It’s absolutely awful here. Do you like the football. I love football didn’t have a choice really having two boys who have played since they were 5. Keep enjoying that gorgeous weather. Xx
I think hospital letters are very confusing a lot of the time, consultation and possible laser doesn't make a lot of sense to me either. You've just had consultation and were told you were getting laser. Can you phone his secretary and query exactly what letter means ?No triplet I am the odd one out, I really hate football. My son was hopeless at football, he's much more arty and creative. Football was never a big thing in my family,even though I have 3 brothers and my partner is a bike and motor racing fan, so no football in this family. England is welcome to win today as far as I'm concerned 😁 x
Yes very confusing I will give them a call. My sons are football crazy first and foremost and any other sport after that. I have one Liverpool fan and one Southampton even though we are all from Bournemouth 😂. Thanks for letting us take the win. 😂 xx
That's funny none of them support Bournemouth or are they a really bad team?!!! My son does boxing training and loves the big boxing events whereas I hate all sport . By all accounts you will definitely win anyway even without my support ☺️ x
Oh we love boxing. No Bournemouth are not really bad they use to be in the premiership but they just chose their teams when they were younger and stuck to them. Xx
Hi Redshoes. I know you have had a right old time of it bless you. I thought everything was going well for me post-trab but these headaches are awful. I’m cross that my consultant spoke to me on the phone & said it was unlikely to be eye-related- how he can know that without seeing me I don’t know. I suspect like you that my pressure has been up & down which I have heard can happen post-trab which is why they see you every week. Even though it’s private he is inundated- again flipping Covid has a lot to answer for! Good luck with your appointment- fingers crossed for you. Keep us posted. Xx
Thanks Wales, yes Covid has a lot to answer for. I do hope you can get some relief from the headaches soon and your trab recovery goes well. It’s annoying when consultants don’t tell you everything, I know they are very busy but eyesight is so crucial they should realise how stressful it all is. Good luck with your appointment xx
Hi Wales, Witchie and all you lovely people. Just to report that I had a good consultation today, far better than I expected. He has reduced my steroid drops and now doesn’t need to see me for a month so things are looking up! Pressures were 16 & 17 but he wants the one in the operated eye to come down more yet. He does seem to have done a good job on my battle scarred old eyes so I’m keeping fingers crossed that I’m on my way at last. I always need a glass of wine when I get home whether the news has been good or bad so I’m going to have one now!!🍷
Redshoes15 thats amazing news very pleased for you. Enjoy the wine 🍷 xx
Cheers enjoy your wine, have several glasses ha ha.I'm so pleased for you, it's been a wee while coming but that's you getting there now hurrah 😁. You must have been so relieved. Great news you can finally reduce your drops at last and he's happy enough you don't need to see him for a month. A good appointment. 😁 X
Oh that is good news. I bet you’re relieved. Yes it’s Friday night so definitely some wine for me! Enjoy xx
You whinge and Whine as much as you want, it gets it off your chest and makes you feel a little better, we will all do it, and no one here will judge you for it, sending you best wishes !
floki7 Thankyou so much xx
It's the visual field which matters so 100% is great. It sounds as though they're managing your treatment well to keep it that way. Keeping my fingers crossed for you.
Hello NewCardinal thankyou for the message that’s very kind. I hope it’s ok so scary. I guess I should be pleased with no visual field damage. What type of gluacoma do you have. How long and how old are you. I’m 53 diagnosed in December last year. Really scared of everything though. Does yours run in your family. Sorry if it’s to many nosey questions I just like to know how people cope.
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