I was diagnosed with glaucoma in my left eye with pseudo exfoliation in both eyes in July. I was put on Latanoprost, but went I went back to the hospital last week, there had been no change. I am now on bimoitol and Timilol drops (Sorry about the spelling its probably not right)
Basically, I am terrified of going blind. My mum lost her sight due to glaucoma and macular degeneration and I saw how badly she went down hill when she lost her independence.
I have had to wait so long for appointments. From the optician first noticing a problem and telling me the hospital would contact me in a few days; which never happened, I got a letter with an appointment that was two months from when the optician saw me. Then when I did get to see the eye doctor she said they would review the Lantaprost drops in 6 weeks. I did not get another appointment until 14 weeks later. All the time the Lantaprost hadn't been working, so I am worried that all this time the pressures have damaged my sight further.
I know no one can tell me it'll be fine, but I wouldn't mind a bit of reassurance.
I am truly terrified.
Thank you
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Trainer47
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Hi Trainer47 so sorry to hear of your diagnosis. I was diagnosed with open angle glaucoma last December and I really do understand how you feel. I don’t know what pseudo exfoliation is though so excuse my ignorance there. May I ask how old your mum was when diagnosed and if her gluacoma was advanced. I do know it’s really rare to go blind now though. I understand your anxiety with respect to the drops not working. I also was on Lantanprost and that didn’t work for me also laser in one eye didn’t work so now on 3 different drops a day. I do get seen every 8 weeks. It’s bad you didn’t see someone for 14 weeks. Have you had the other appointment. Have you had visual field tests. All I can say is stay on this forum the people are lovely and if you havnt had your appointment call the hospital also give Gluacoma UK a call. They will help to put your mind at rest. Keep in touch. Take care. Xx
I think my mum was in her late sixties early seventies when she was first diagnosed and she passed away when she was 81. Her sight deteriorated slowly from about her mid seventies.
It is reassuring that you say its rare to go blind and I'm not an oddity that the drops didn't work. All sorts go through your mind. I never really thought I was a worrier until this happened.
I did complain a bit about the delay, but they said it was due to them only having limited appointments due to social distancing and a back log. I haven't been given another appointment yet, but the consultant said he wanted to see me in 6 weeks time. I think if I haven't heard in a few weeks I will keep ringing until I get one.
Thank you again for all your advice and reassurance. I hope that they've found something that works for you now.
I’m glad I could be of some help. Being newly diagnosed I’m still trying to deal with this myself but still want to try and help others. It is scary but mediocre is advancing all the time. I’m sorry about about your mum. Maybe have macular and gluacoma is worse again I don’t know. I would push again at the hospital it’s not right they have left you with a drop that’s not working xx
Yes, it is rare to go blind, I was born into a glaucoma family, I'm. 4th generation, I was born in August 1962 regustered blind October 2017, I have no vision in my left eye and limited in the right, so please try and remember that, and this is the latest figure I heard, 96% of people registered blind have some degree of vision, keep taking your drops, chase hospital appts, I'd advise, this is easier said than done, after a, hospital appt assuming everything is OK, don't think about your glaucoma because I take the attitude that if the hospital are happy I'm not going to sit at home worrying about it
Aww bless you & welcome to the forum! Know exactly how you feel, I was diagnosed last October & felt exactly the same. My mum also had Glaucoma and went blind, but not until the end of her life at 89. Until then she maintained a reasonable level of sight & it didn’t stop her from living her life. Don’t forget medicine has come a long way since our mum’s day! I was diagnosed late, it was missed by my optician & I have quite a lot of sight loss in one eye. For me drops alone didn’t keep the pressure down either and I had a trabeculectomy in June this year. I go back to see my consultant in early December so will find out how it’s going then. I take the same stance as Jennymary I try not to worry between appointments, if my consultant is happy to wait until December to see me then (I last saw him in July) then I trust that he is confident all will be OK. 🤞. From what you have said it sounds like yours has been caught early & you don’t have any sight loss? I agree with others as well- I would keep on at the clinic - those who make the most noise get seen quicker. Good luck on your journey and keep us posted.
Hi Trainer47, I can only echo what everybody else has said. I was only diagnosed in September so I can totally understand how frightened you feel. But unlike your mum who sadly didn’t know until late in life, you now know and are receiving treatment that it appears your mother possibly didn’t get. I am sorry you have been waiting for appointments, all I can suggest, as others have done is phone to chase. At least now you are on other drops so hopefully when you go back you will get better news. Good luck with everything and do keep in touch on the forum if you are concerned. Also Glaucoma UK helpline is brilliant.
Hi Trainer 47, Welcome to the forum. I was also diagnosed in July with Ocular Hypertension in my left eye and Open Angle Glaucoma in my Right eye. My left eye is normal however my right eye has some loss of sight. I don't know anything about the type of Glaucoma that you have. I was also put on latanoprost drops and luckily they have worked so far for me. There are several different types of drops and hopefully the new ones that you are on will work better for you. The losing sight is a worry as I have had relatives with sight issues however I do think treatment has moved on a lot and am hopeful that if i follow the guidance of my consultant I should manage fine in my old age. Im 52 now so need to keep my vision for a long time yet hopefully. The delays in appointments is very frustrating my last one was a few weeks late as well. All the very best on your Glaucoma journey its a path none of us wanted but we are all here to support each other and I have found that very helpful. Take care and try not to worry x
Welcome to the forum, where you will find a wealth of information and support, we are all in the same boat with different experiences and have helped one another. At the start of the pandemic I waited a year for an appointment, then found i needed an op, so always chase up the the clinic if you feel unhappy about anything. Good luck on your journey !
If you haven’t received an appointment within the time scale the consultant gave try contacting his/her secretary who will be able to contact the consultant on your behalf and make an appointment if it’s deemed necessary.
Possible glaucoma was identified in 2019 during a routine opticians appointment.
I was referred to my local eye clinic, my eye pressures were high, and was told that I would be monitored for any changes.
Unfortunately, due to the lockdown I was not seen until May this year! and not put on any treatment until July, by which time I had lost some vision in my right eye.
I am now on Azopt and Ganfort drops and my pressures are down.
I am sure that once the right treatment is found your glaucoma will stabilise.
I have trust in the N.H.S. however, I feel that we have to take ownership of our conditions. Contacting Glaucoma U.K. is a good start.
Follow the advice and treatment offered, but keep a detailed record of your appointments and make sure that you question the doctors if you have doubts about your treatment.
I would also like to thank contributors on this forum as I have found it useful and helpful in understanding my condition.
Hi Trainer47, I read your post and I have looked up your condition see link below.You have been using lantaprost for 4 months with no change... now you are waiting to see if these drops work. when is your next appointment. Drops usually work within a few days to bring down your pressure. Your condition it seems is difficult to treat with drops as your condition creates a blockage in your trabecular meshwork this then increases pressure
If it were me I would read this article and then call the secretary for another appointment to discuss having MicroPulse laser trabeculoplasty. here is the article it is very long....
Don't wait around. Perhaps if you had this procedure it would help with the pressure before a surgical procedure is required.
'An age-related systemic disease manifesting primarily in the eyes, pseudoexfoliation is characterized by the accumulation of amyloid protein-type material on the surface of the lens. This material then flakes off, resulting in the blockage of the trabecular meshwork, which in turn causes IOP to rise.
'Pseudoexfoliation is the most common cause of secondary glaucoma worldwide and can be difficult to treat. MicroPulse laser trabeculoplasty is an effective treatment that is safe and can be repeated as necessary'
'It is an excellent option for those who have elevated pressure that needs to be temporally controlled before a definitive surgical procedure'
I have open angled glaucoma diagnosed in january last. i had slt laser, this is different to micropulse laser. its not a cure, and each person is different in terms of how long it lasts. i do take monoprost that is lantaprost the one you tried...
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