Hi whose got open angle and how long have you had it. Do you still drive and have the life you had before diagnosis. I was diagnosed in December last year. So so scared
Scared: Hi whose got open angle and how long... - Glaucoma UK
Scared
41 Replies
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Hi Julie I know exactly how you feel. I was diagnosed 2 years ago in October with oag and I'm still terrified. I do get a lot of help from talking to people on here.I'm awaiting my trabs op and think about it 24 hours a day.
It really helps to speak with others on here or the helpline.
Maybe one day we will get off this fairground ride and not be so scared all the time.
You are not alone. I'm trying to take one day at a time. Big hugs xx
in reply to callie77
Thankyou @callie so nice of you to reply to me when your going through a tough time yourself xx
Oh Julie I wish I could say or do something to make you feel better, to reassure you that your life doesn't need to change and in all probability won't change, that you won't lose your vision. You know you were diagnosed early,that SLT has lowered the pressure in your eye and there's nothing to stop it being equally successful in your other eye but when you are so scared and worried none of this makes any difference to the way you are feeling.
There are so many people on here who have had glaucoma for a huge number of years and although they may have needed to make some adjustments over the years they all still have their eyesight and are living full lives.
I hope you get some replies that make you feel even a little better.
Sending you lots of hugs Julie x
in reply to
Thankyou so much. Your always so kind xx
in reply to
I just totally understand being so consumed with fear to the point it does take over your life. When your mind just runs away with negative thoughts it's not easy to quieten it down again . You aren't in a good place just now but you will be again. I'm always here for you Julie. Lu is sending you some doggy kisses. X
in reply to
Ahh Witchie Thankyou so much. Give Lu a massive Hug from me xx
Ditto what Witchie said. 🤗 we’re all here for you honey bunny xx
in reply to Wales99
Thankyou Wales99 I can always rely on you and Hidden to pick me up xx
Ahh Thankyou for you reply I’m sooty you have been diagnosed with this to. It is scary. It’s really good news about your friends dad and granny. I’ve had SLT on one eye when I go back on the 10th for the other I eye I will get some results to say if laser worked. Keep in touch and good luck with your journey x
Could be worse, I've been in hospital since Monday, dislocated shoulder and broken bones, painful knee where there's nothing wrong, unable to walk, off to rehab tomorrow, beginning to wonder if I'll be allowed to return to my first floor flat that I've called home for many years, 10k race is 4 weeks today so may have to pull out
Oh no! What happened? Are you in much pain? So sorry to hear this.
in reply to Jennymary
Oh jennymary sending wishes for a speedy recovery take care x
Oh bless you! My heart goes out to you! Can’t imagine all the emotions you must be going through! Please know we’re here for you, ok not near enough to physically help however sending huge hugs and support! Let us know how you get on during the week, really hope things improve and you can go back hone xx
in reply to Jennymary
Oh goodness that sounds dreadful. I hope rehab goes well and that you are able to return to your home. Forget about the race and just concentrate on you. X
Oh JennyMary so sorry to hear you are in a bad way at the moment. I'm sending hugs and hope that you will feel better soon x
HelloSorry to hear you are struggling. I was diagnosed in February this year, which came as an enormous shock to me. I was very stressed about it, but after a few appointments at the eye clinic, I now feel much better. I already had extremely poor sight, before diagnosed. However, my view is I could be in a much worse position so I try and stay positive and carry on as normal. I hope you are able to get to a calmer place and enjoy everyday.
in reply to Nala2509
Thankyou for your message. I hope everything goes well for you xx
Hi Julie, sorry to hear you are still feeling scared. As you know, I was diagnosed in June and am on drops. I know how you feel as I get scared now and again, but feeling a bit better about it now. Someone I knew years ago got i touch with me on Facebook and they have had glaucoma for about 20 years now and they lead a full life and still drive even though one of their eyes (not anything to do with glaucoma) had something else wrong with it so he basically managed with one eye. His driving licence has to be renewed every two years and he has just passed whatever criteria there is and has had his licence renewed again. I had one cataract op four weeks ago and the other one issue on September 6th. Remember, we are all there for you. x
in reply to Engima
Thankyou for replying to me. How are you coming to terms with it all. I always read all the positive stories and just pray that’s me. I’ve had laser in one eye and due the other on the 10th September I hope your cataract op goes well and also your recovering from the other recent one x
Engima in reply to
Hi Julie. Hope you are feeling stronger today. Do not really know how I am coming to terms with having glaucoma, but I just try to be positive and think that there are people worse off than me out there. Also at the moment I have lots of other things to worry about, you probably saw my post that mentioned my cat having stomach cancer. Plus my husband's brother has bone cancer and it not too good, my sister's husband recently died and his funeral is next week. However now that I am getting treated for the glaucoma and having heard how other people have had it for many years and are still OK makes me feel more positive as well. Thanks for your good wishes regarding my cataract op. The right eye is taking a while to settle down and aches quite a bit, but hopefully that too will pass. Take care and remember that there are lots of people (including myself) out there for you. xx
in reply to Engima
Thankyou for replying to me. I’m so sorry you have so much going on that’s an awful lot to contend with. You are right there are a lot of people who have had glaucoma for years and are doing well I really have to focus on that. I’m glad your cataract op went well. Please take care sending hugs to you xx
Engima in reply to
Thanks Julie - sending big hugs to you as well. x
I am 52 and was diagnosed 5 weeks ago with POA in my right eye, Ocular Hypertension in my left. Currently on drops and awaiting my check up appointment. I have lost vision in my right eye and that terrifies me that I will loose more. I am trying to be positive that my left eye does not have Glaucoma and optic nerve/ fields are perfect for that eye. Im hoping the drops will stop it developing in that eye, only time will tell. Correct me if i'm wrong but I don't think that you have lost any vision and that means that they have caught it very early and certainly earlier than a lot of people and my understanding is if caught early its easier to treat. I understand what you are feeling, since iv been diagnosed its been on my mind 24/7 constantly worrying about any everyday activity if that could make it worse etc, however from the posts here I think its just a case of acceptance and living your life to the full and forgetting about glaucoma ( follow treatment to the letter and appointments etc). Iv been very lucky with my health so far apart from this and for that I am thankful.xx
in reply to Kiara-52
Hi and Thankyou for your reply. Bless you for answering me when you have only just been diagnosed. Yes your right my visual field test are all good so I’m hoping it’s been caught early I’ve had to have laser in one eye and other eye will be done on the 10th. I think your right it’s a case of coming to terms with it and enjoying life I so am going to try xx
Hope you're not on a googling spree like I was the other day but if so there are many positive stories out there. Being ok with the lack of control and not knowing is really scary ay. Get some fresh air and breathe through it. Bad days make the good ones extra special 🙂
in reply to
I was googling again yes. It’s not good I have to stop x
Hi Julie, I think I said before, was diagnosed with open-angle glaucoma in 1989. Doctor thought Posner-Schlosman Syndrome, but after 15 years or so, new doc said Not, was scleritis, which is less good news, sometimes with uveitis. But basically, inflammation clogging up the drains like tree-roots in a sewer. So, drops and new drains. 1st was a Sheie's, unusual these days, but sclera was too thin after years of high pressure. Then tube. Then other eye got stroppy, but pressure has never been as high and trab keeping it at 12. My highest in my 1st eye was 65. So, 72 yrs old and still driving. Drops morning and night. Had cataracts done, need specs for driving and reading. Have been having bother since 1969 but just inflammation then. They think the root cause may be I had a burst retrocaecal appendix + pneumonia in 1963 during an outbreak of gastric flu, so wasnt diagnosed for a few days, very touch and go. Then they found I had had TB. Immune system cranked into action and kinda won't switch off. So all I can do is be grateful for all the fab docs out there thru the years who have pulled me thru. I Am Lucky! Drops have improved - all mine have to be preservative-free, and I also take a pill that is usually termed chemo. Say after me: I Am Lucky! Even in my lifetime things have come on SO much. They will continue to improve. Just keep looking after yourself, try to stay as calm as possible. Your condition has been diagnosed, you are being treated, chill... cos high blood pressure won't help! Very good luck to you... and other sufferers. X
in reply to Hula48
Thankyou so much for such a lovely message. What an inspiration you are. It’s amazing what you have been through and still living life to the full. Take care keep in touch and thankyou again xx
Thankyou and good luck on Wednesday let me know how it goes xx
Hi Julie. I’m so sorry you are feeling this way. There is no magic drop that can take away our fear of worrying what the future will hold for our eyes. Perhaps you need time away from reading stuff/posts about glaucoma? There will always be a horror story out there if you go looking. I find I’m only really worried about my future when I read negative stuff. Take time to focus on things you enjoy doing. No one can tell you not to worry but you are very early on in your journey and you it could start affecting you in other ways. Keep doing what you are doing with your eye drops & appointments and live day to day. You might have good vision for the next 40 years, you might not. Worrying yourself sick will not change your future. Don’t let your condition spoil your life. You can still see today and that’s what matters. Sorry if I appear harsh but I’ve had the whole eye saga myself for 17 years now and this year I will turn 40. I have had a good 17 years and hope by the end of the next 17 years, I will still have my vision. To answer your question though, I still drive, read, watch tv, scroll through my phone and I work! 😃. I have a teenager so I don’t have time to worry about my eyes every day 😂. Take care Julie x
in reply to Vich81
Thankyou for messaging me it’s a lovely message and not harsh at all. It’s so good to hear you have come through 17 like that and long may it continue. Do you open angle or a different gluacoma. You were very young and still very young to have been diagnosed with it. Take care and Thankyou again
Vich81 in reply to
Hi Julie. I have open angle. Don’t get me wrong, it’s not been plain sailing but I keep my worries, tears and fears for when things aren’t going so good. I literally refuse to worry day to day. Give or take some greyed out areas, but my visual fields have been pretty much the same for years and years which is good.
in reply to Vich81
Hi Thankyou so much for replying to me. How long have you had it. I was diagnosed in December last year and had laser 6 weeks ago on one eye the other eye is being done on the 10th September. It worries me they have done laser so soon but I havnt lost any visual field so I’m hoping it’s because it’s to keep it from worsening. The highest my pressures have been are 34 and the lowest 19. It’s really good you have been the same for years do you drive as well
in reply to Vich81
Is gluacoma in your family I so worry for my sons
Vich81 in reply to
My right eye at one point early on was 54! I am incredibly lucky. I almost went blind during pregnancy too. I think you can get reassurance from the fact no changes to visual field. There is no glaucoma in my family. I think it was either a steroid nasal spray for allergies that I used in my teens or uncontrolled high blood pressure. Your sons should always just get their pressures checked at routine optician appointments. It’s not usual for them to check pressure of kids but I insist for my daughter as I don’t take chances. She is 14 but my optician is nice and understands.
in reply to Vich81
Thankyou so much. Wow you’ve been through a lot. My sons are 29 and 31 are lifestyle has been for test but youngest hasn’t been yet x
Hi Julie, just to add to the last comment - I have had open angle glaucoma for 17 years and haven’t gone blind. I still drive and do everything I did before my diagnosis xx
in reply to Redshoes15
Thankyou so much for your reassurance I really appreciate it. It’s made me feel so much more relaxed xx
Redshoes15 in reply to
Xxx
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