Positive Stories with Glaucoma

[Welshsailor]

hi, can anyone share positive stories with glaucoma please?

[Astilbe]

Well I have had glaucoma in both eyes for over 20 years. I have certainly had my ups and downs, still suffering problems with inflammation and discomfort in my left eye. Had a Presserflo shunt and cataract removal in that eye. Plus a Trab in my right eye over the last couple of years.

Still, if it is a positive story you want, I think that overall mine is positive.

I can still drive!!

I took a DVLA sight test 2 months ago and passed all of the field test markers and also distance sight. My Dad had Glaucoma and lost some of his sight as he hadn't had any treatment (not having short sight like me so not visiting opticians) so I have always taken care of my eyes in terms of regular visits to opticians and Glaucoma clinics. I remember what an eye specialist told me when I was first referred to a glaucoma clinic all those years ago: 'you will not go blind' he said.

I think that people are referred to clinics earlier than I was. They used to refer when eye pressures were 24 (which I was told was borderline referral). Now it is realised that pressures have to be lower than that to preserve optic nerves long term. So people are started on drops earlier than I was.

I hope that this is positive for you, it certainly is for me.

[Welshsailor in reply to Astilbe]

thank you for your comment. I have the dreaded visual field test on Friday! I hate doing doing them lol

[Bellamolly60 in reply to Astilbe]

excellent I had the condition for 40:years 🇺🇦👍

[Welshsailor in reply to Bellamolly60]

all going ok?

[Nonswimmer]

Hello, like Astilbe I too have had ups and downs since beig diagnosed with glaucoma in 2003 now aged 77 I recently passe the DVLA driving test. Having recently just has a positive consultantion I am unable to obtain the Azopt brinzolamide drops I've used for 20 years! there is not a chemist in my area that has any, is anyone else having this problem please?

[Lorraine-3 in reply to Nonswimmer]

hi I’ve previously had this problem with AZopt and local chemists, so I swapped to Pharmacy2U and they have never had stock problems - I had a bottle arrive this week.

[Welshsailor in reply to Nonswimmer]

than you for sharing your experience

[Timmy01 in reply to Nonswimmer]

There’s no brinzolamide in my area either. With no stock in the warehouses and no delivery, expected it’s a bit of a problem isn’t it. Had an IOP of 55 in the past!

[Nonswimmer in reply to Timmy01]

Hello. Two days on the telephone ringing all local chemist, I have the Azopt and an anti-biotic drop I need, problem solved until next month. I did take a look at the pharmacy2U website which would be useful if one lived in a sparse area, here there are five chemist in walking distance and many main chain nearby, it was a small independant chemist that had some stock.

[Dumyat26]

Hope this is relatively positive. I was diagnosed in 2010 by which time I had lost 30% FofV in left eye & 10% in right. Mainly due to not getting eyes tested for many years.

Over the years since my consultant has put me various eye drops, currently on 3 varieties, 2 taken twice daily and one before bed. Have had SLT twice to reduce pressures, both successfully & with no side effects. No further loss of F of V

Am still driving. Initially was on 3 year renewal of licence after DVLA statutory test but for some reason (unexplained) was put onto annual tests at start of pandemic. The DVLA test is always a worry but have always had 99% success rate.

Have found the worst aspect of all this is dealing with DVLA but apart from that it's just another aspect of getting older but could be worse!

[Hidden]

Hi Welshsailor, I'm pleased to say 3 years on from optic nerve bleed & 2 years on from diagnosis I am over the shock. I can now manage a repeat prescription order easily - practice makes perfect. I failed the FV test, but did that make me determined to pass it next time round!? I started to use the bus using a disabled bus pass based on my diagnosis. That period of lifts, buses & walking are all in the past. My local MP supported my reapplication, which was positive. My employer was prepared to adjust my job role to ensure I could do alternatives to driving. Once I felt confident to start driving the vans & cars again, I took the local authority driving assessment and passed. I decided not to pay for a minibus instruction & qualification, which had been a longstanding entitlement to us more mature folk. I read the Facebook : DVLA (Medical Issues), which gave me a better understanding of the challenges. My sight, determination and support from MP resulted in a 5 YEAR LICENCE! I discovered GLAUCOMA UK website and their informative seminars. I believe I recently read that if my optician or hospital assessments do not show any deterioration in my sight, my 5 year medical licence will be extended. This forum has helped me turn around the resentment and anger I felt at losing my independence and dip in well being. I am now better informed and prepared for the day that public transport is my only option and that I shall require more complex treatment than eye drops. I have been fortunate. Good luck to you.

[Welshsailor in reply to Hidden]

thank you for sharing your story

[Peg99]

Hello Welshsailor

I have had normal tension glaucoma for 37 years. The bad bit is it was discovered late (when I had already lost 95% of my vision), I was no longer able to drive and, I was told that I would probably lose the last 5% over the next 5 years.

But they were wrong!

I had my trabeculectomies and have been on a mixture of 3 or 4 drops and Diamox capsules ever since. Yes, I've had a few ups and downs but nothing big and 37 years later I am still seeing as well as I was at diagnosis.

While it might all sound a bit bleak to some, for me, it really is a positive story because I can see to do all I need to, still lead a full life and continue to hang on to that remaining bit of eye sight. As one of my Ophthalmologists said to me, I am more than likely going to keep my sight for my lifetime as it's a miracle I've kept it this long: and in my book, miracles are positive things.

Good luck to you, and think positive.

[Welshsailor in reply to Peg99]

that is really positive! How old were you when you were diagnosed if you don’t mind me asking?

[Peg99 in reply to Welshsailor]

Hi

I was 29 with no family history of glaucoma which is why it was missed. Believe it or not, I thought I was just tired and overworked as I had been very busy at work, and the GP agreed. Still, all's well that ends well, as they say.

[Seeu2 in reply to Peg99]

Bless you! That’s a wonderful and comforting account of your Journey and very positive indeed. x

[AlfredV]

I started getting eye problems in 2016 following a glaucoma diagnosis. Unfortunately I reacted badly to all drops. Went through some tough times including 13 surgeries (some carried out as emergency cases), and eye pressures so high my vision would cloud over.

But the surgeries eventually delivered what was needed and I now have fairly stable pressures at 9 and 14. On top of that, despite some optic nerve damage I still have 100% field results. The surgeries have left me with some dry eye, which can be annoying and inconvenient, but all in all I am confident my sight has been saved, although it took a while to get there.

[Welshsailor in reply to AlfredV]

brilliant news! Thank you for sharing

[Decorator123]

hi everyone am Phil 44 don’t really have much to add just to say it be nice to read all your positive stories give us all hope thanks

[Welshsailor in reply to Decorator123]

hi Phil when was you diagnosed? What pressures? VF ok?

[Decorator123 in reply to Welshsailor]

say 5 years ago when I turn 40 had high pressure in both eyes, say high 20s . After started on the drops ended up going to the glaucoma monitoring clinic here there and everywhere ended up get referred to the hospital after 3 years. After a day of test they think it pigment dispersion tried the laser treatment and just had surgery on my left eye eight months ago as for v/f the left has a a lot of damage but past the DVLA test so got a five-year medical driving license.

[Welshsailor in reply to Decorator123]

thanks for sharing. What surgery did you have

[Decorator123]

a trab think that what it shorten down to What about your self