Recently diagnosed

[Mckie]

I’m 59 and have had a history of high pressures. Today I’m devastated to have been diagnosed with glaucoma- and worry about my eyesight in the future. Please can anyone give me hope 😢

[Astilbe]

There is lots of hope. Keeping appointments, using medication, taking care of your health, all important. Lots of information out there. And support from this forum on specific queries.I was like you, a few years of raised eye pressures then diagnosis of glaucoma in my early fifties. Treatment is focused on lowering eye pressure in your case as it was in mine.

I am now 78 and with years of drops and then operations in the last 4 years I still have a driving licence and my sight is stable.

So don't worry and take care of yourself.

[Mckie in reply to Astilbe]

Thank you so much - that’s the sort of support I was after xxx

[Tschuggen]

Hi, I was in a similar position. Like Astilbe, the important things are using the medication and keeping appointments at the hospital. I thought I would never be able to put in my eye drops, but you do get better at it with practice. Don’t be afraid to write down questions to ask at your appointments. I am just a few years into my Glaucoma journey and vividly remember the feeling of being diagnosed - all I can say is it does subside.

[Mckie in reply to Tschuggen]

Thank you - this group is so supportive x

[Caneries]

I had high eye pressure since 38 and eye drops they worked for 14 years and then stopped. I put off the trabulctony for and tried other drops & Lazer but did not work for me so had trabulectomy in each eye now. It’s taken a while to recover and eyes not the same but I have my sight.

I’m 54 still drive and still have good eye sight and field vision.

[Mckie in reply to Caneries]

Thank you - I was let down by my provider - I hate knocking the NHS but the contracted provider lost the ophthalmic contract but didn’t tell me so I ‘fell through the cracks’ I tried calling but no answer. I’m a bit scared but will feel better when I get a plan of action x

[Angel5454]

I understand totally but there are very good medicines to help the condition and there is so much research going on about it too. I’ve had it for about six or seven years and recently had surgery for it as my meds were not controlling it. Surgery is the last resort and the doctors will find the best way for you to go. There are lots of different eye drops so they will find the best one for you. You will always find a lot of support on here so there will always be someone with any questions that you have. Everyone on here has had a different journey and different treatments so you will get a balanced response.

[Mckie in reply to Angel5454]

It is very hard as information on the internet is quite confusing - I’m waiting for an appt for the glaucoma clinic - once I have a plan of action I’ll feel better x

[Sapeur87]

Probably everyone diagnosed with Glaucoma has the same reaction. Perfectly normal.

What I would suggest is that you take the fight to Glaucoma and face it head on. You can't hide from it.

Fill your head with as much knowledge as you can, ask questions and remain open minded to the various treatments available and offered. Choose carefully. Once you have a 'route map' the initial feeling of despair and panic will subside and you will feel a lot more in control.

Acceptance is liberating. Don't live in fear.

Good luck

PS

If you are financially able I would suggest initially seeing a private consultant for diagnosis and a treatment plan, then go back into the NHS system. That way you will be seen quickly. NHS waiting times can be awful and with initial diagnosis often waiting and worrying is the hardest part.

[Mckie in reply to Sapeur87]

Thank you - glad to know I’m not the only one - this group seems very supportive x

[NewSh0e]

I’m sorry you’ve had this shock, I think it applies to all of us when we understand the implications of the condition.

The good news is that it doesn’t have to you losing your sight. I am 57 now and I’ve had glaucoma for 15 years. Turns out I probably had it even longer than that because it was well progressed when I went for a routine eye test. I’ve been on drops of different kinds ever since, increasing in strength since being “forgotten” during Covid.

All that to say, this isn’t a condition to live with passively. Take your drops as instructed, push for appointments if they’re not scheduled as promised and, as others have said, and if you can afford it, consider a private specialist. I found mine on Top Doctors and he’s been a huge support - apart from expertise, what you’re paying for is their time, something in short supply in the NHS unfortunately.

There’s no reason to lose your sight and research is progressing all the time. There’s lots of support to be had on here, you’re not alone!

[Mckie in reply to NewSh0e]

Thank you so much for the positivity - I’m fortunate I have private medical cover at work but want to have my initial consult at the glaucoma clinic to get the treatment underway. I’ve been on monopost, for high pressures for about 6-7 years I think (time goes so quickly you lose track). And only found out yesterday I now have nerve damage - so just processing x

[Piggy-in-the-middle in reply to Mckie]

Remember that everyone gets nerve damage with age - glaucoma just means more than average. Apparently there are so many nerves from the retina that a lot can be damaged before you notice. So if there’s any change to your vision than follow up and question it. You may see effects before the ophthalmologist! Best advice is to keep healthy and enjoy yourself. Hope it all works out for you.

[Mckie in reply to Piggy-in-the-middle]

Thank you very much x

[Spanieldoglover]

Hi, I can only echo the good advice you have already been given on this really helpful forum.

The only thing I would add is make sure you find out what type of glaucoma you have, I didn’t even know there were different types when I was diagnosed 3 years ago, and ask about SLT. SLT is now the recommenced first treatment for glaucoma and they like to do it before the person starts taking lots of drops.

It’s not successful for everyone but I had it pretty much straight away and my condition has remained stable and as yet I have not had to use drops. I’m the same age as you.

All ophthalmologists are different though and I know through the NHS they still tend to give drops too. As others have said if it is possible at all to have a private consultation and then go back to the NHS is may be reassuring for you.

[Mckie in reply to Spanieldoglover]

Thank you - I’ve noticed that on the internet, bad habit I know using Dr Google but needed some info. Could kick myself for not asking more questions yesterday - but was in shock. Xxx

[Spanieldoglover in reply to Mckie]

I know what you mean, it is a shock! I went with cataracts and was told I had glaucoma. Google can be scary but can help with what questions you need to ask too. Glaucoma UK have a helpline and they are really good.

Just make sure you push to get your appointment as soon as possible xx

[Mckie in reply to Spanieldoglover]

Many thanks for your advice x

[hirsey12]

Echo all the good comments on here. You may find your private medical insurance doesn’t cover chronic conditions such as glaucoma. I tried to claim for SLT and it was declined, the first time I’d ever claimed. So a bit disappointing.

[Mckie in reply to hirsey12]

Many thanks - oh how disappointing for you, I’ll have to check mine x

[Spanieldoglover in reply to hirsey12]

That’s such a shame for you. I suppose policies are different but mine did cover me for SLT as I was newly diagnosed. They then covered me for a year but as you said, after that as it’s a chronic condition, I can’t get it covered by insurance now.

[Lovearoastdinner]

I am just 70. Diagnosed with glaucoma in 2020. Came out of the blue. Was put on an eye drop, once a night, in left eye. Had regular checks at CHEC in Stratford on Avon and then Blinley. All seemed good.Then asked if I could be referred to Machen unit at Warwick Hospital. First visit was in Sept 23. All tests done. Went to see Specialist in Feb 24. Said if did not have surgery, sight in left eye could be lost!!

Had surgery in June (trabeculectomy + bleb). I am a golfer and when asked if I'd play he said, "Not for a while!" I had two months of life on hold. No lifting, bending housework, gardening or driving. Could have gentle exercise in form of walk. However, in Sept I was back on golf course. Pressures are good, and I don't have to use drops for glaucoma. Just get your regular checks, trust the treatment, and you will be fine. I have found the Glaucoma forum and like sufferers to be really helpful too. Angela

[Mckie in reply to Lovearoastdinner]

That is positive news - thank you. X

[warwickshire_singh in reply to Lovearoastdinner]

I used to go to Machin, but they couldn't do anything for me so they reffered me to BMEC

[Lovearoastdinner in reply to warwickshire_singh]

I saw Mr Toor at Machen Unit. He was my saviour. Good luck k at BMEC. Angela

[warwickshire_singh in reply to Lovearoastdinner]

been at BMEC since 2013. a brilliant man Gary Misson told me that they can help me... how right he was!

[Lovearoastdinner in reply to warwickshire_singh]

These people are wonderful. So pleased we have both received excellent care. Eyes are so precious.

[Bess21 in reply to Lovearoastdinner]

Did you see Mr Toor on nhs ? I saw him privately for consultation December 24

[Lovearoastdinner in reply to Bess21]

I saw him on NHS. Now see another consultant Mr Ibrahim. Mr Toor did my surgery. Ang

[Bess21 in reply to Lovearoastdinner]

Thanks has Mr Toor stopped nhs now

[Lovearoastdinner in reply to Bess21]

Don't think he has stopped NHS, but not 100 percent sure. He has a Website. A x

[Linnus1]

hi I’m 60 and I was recently misdiagnosed with glaucoma, I went to Northwestern Hospital in Chicago and had three hours of intense high tech exams and they told me that I have a birth defect with the optic nerve is very small it mimics glaucoma, so if you could go somewhere in the UK and have them check the size of your optic nerve and see if that is the case. Although you can still go blind with this issue. there are treatments for it steroid drops and some laser procedure that I have to find out about the condition is called ONH. Optic nerve hypoplasia

[Mckie in reply to Linnus1]

Thank you x

[Blairdardie]

HiGot diagnosed in one eye a year ago at 57. Quite shocked, but not as shocked as I was when advised that I had to be sent for MRI scan for brain tumor as pressure in eyes was normal. Thankfully no tumor so coping with glaucoma better than I would have been due to result of MRI!

Got laser treatment to both eyes last April. Back to consultant next week to see where I am at. Trying to be somewhat philosophical, as you probably guessed.

[Mckie in reply to Blairdardie]

How awful - glad it wasn’t a tumour x

[Blairdardie in reply to Mckie]

Me too! Should have said, my optician carried out a number of tests last week and there is no identified deterioration since the laser treatment (which effectively punctures holes around the back of eyes to drain fluid). I have normal tension glaucoma in one eye.

Be interesting to see what treatment my consultant suggests next week; probably another round of laser puncturing or drops.

[Mckie in reply to Blairdardie]

I had the iridotemy 8-10 years ago followed by drops 3-4 years later as pressures started raising x

[KieranGlaucomaUK Administrator]

Hi there. So good to see that this group is so supportive to one another. I hope you got some reassurance from these comments. If you have any questions at all about your diagnosis then please don't hesitate to give us a call or email on 01233 648170 or [e-mail] and we will do our best to answer. Take care.

[Griffira]

I have also recently been diagnosed with primary angle glaucoma in one eye and ocular hypertension in the other. I've been given monopost, which I've been taking diligently while waiting for my appointment at the eye clinic. I'm trying not to worry and be thankful it's been caught, but I am only in my late 40s, and emotionally over the place. I've never had a health condition before. The comments on your post are encouraging but I feel I'm not coping as I'm overthinking and finding it hard to take in information. I keep fearing the worst for the future, even with treatments. Is there anyone in a similar position and what has most helped?

[Mckie in reply to Griffira]

Hi, it is quite traumatising but as you say people on here are very supportive and I’ve just seen a post with details if you need to reach out, there was a teams thing today but I completely forgot about it - maybe they’ll do it again. Try contacting them at 01233 648170 or [e-mail] they may be able to give you information x

[Griffira]

Thank you. I joined the Teams call last night x

[Crafty-gran]

I was diagnosed 18 months ago with normal tension glaucoma

After the initial shock and not knowing much about glaucoma , I joined this group

I’ve learned so much from here and I’d definitely recommend joining the webinars that glaucoma uk offer

Write down your questions for your doctor and take some one with you . My husband always comes in so he can ask any questions I may not have thought of and to relay back what was said , as sometimes you won’t take it all in

Definitely stay in touch on this group

It’s a journey were all in together just all at different stages of it

[Griffira in reply to Crafty-gran]

Thank you. I'm taking my husband with me to my next appointment.