Eye appearance change

[Dabs2024]

Hello everyone, I’m new here!

A bit about me.. I’m 35 and was diagnosed with glaucoma in both eyes 3 years ago after experiencing rainbow shimmers around lights, headaches and blurred vision. I booked a check up at my local opticians for an eye test. I was then rushed to the emergency eye department and spent the next 5 hours being tested. The nurse kept on reassuring me ‘the opticians are always a bit over the top - you will be fine’. However, in the early hours of the morning the eye specialist diagnosed me with glaucoma in both eyes, noting that I had lost a severe amount of peripheral vision in my left eye and some in my right eye. They also noted my eye pressures were dangerously high and that I would continue to lose vision without urgent treatment.

I went through all the emotions of anger, embarrassment, worry and regret for not getting my eyes tested sooner. The following month I had trabulectomy surgery in my left eye. A few months later, I had the same surgery in my right eye. My right eye had always had better vision and was more focused than my left. Unfortunately the operation didn’t bring the pressure down enough and I required two lots of needling over the next few months. I have been on a number of drops over the past 3 years.

It’s now been two years and my most recent test indicated my eye pressures are now on the low side.

Anyway, the reason I have joined this forum is because I have noticed the appearance of my right eye has changed. The colour of my right eye is more dull and my eyelids are different sizes. I am so grateful for the treatment I have had and that it has essentially saved my vision, but I also now hate the way I look and even avoid being in photos because of this. It may sound like I’m being over the top or sensitive, but it has made me feel very insecure and worried. I never knew or was warned that this may happen.

Has anybody else noticed a visible difference in the appearance of their eyes following similar treatment? I talked to my ophthalmologist about this a year ago, showed him photos where difference in my eyes were obvious, but he denied seeing any changes. I have talked to people close around me and they too have noticed a change. It is particularly obvious when I smile. Obviously, nobody quite understands how worried I am and I hope that joining this forum will help me to feel a bit more understood. I don’t know anyone else with glaucoma other than my grandad who recently passed away. I never had the chance to talk about it with him. I feel lucky to now be amongst people who may understand or share my experiences.

Do you think my eyes will ever go back to ‘normal’? Could the eye colour be due to a cataract (I know this can be a follow on problem from trab surgery).

Any advice or guidance would be so very much appreciated.

Thank you

[Dabs2024]

sorry - me again. I should have also mentioned I have notified a significant change in my vision too. I was supposed to have a check up in October (6 month check up) but the hospital had issues with the booking system and did not book me in. I have a check up at the end of January. I am expecting to find my vision has deteriorated.

[whitedog in reply to Dabs2024]

Hi

Glaucoma drops can change your eye colour. They can also increase the length of your lashes and possibly darken the area underneath your eye. And surgery can cause your lids to droop a little.

At 40, I started out with an unusual uveitis disease in my right that heterochromia and glaucoma resulted from. My brown eye started turning green. Over time and after multiple drops and surgeries my eyelid drooped and the eye became dark again - and now it's much darker than my left.

My consultant once mentioned the droop of my right eyelid and asked if it bothered me. I said it might have if I was younger but, at that point, late 40s I think, I honestly didn't care so long as I could see. Everyone is different though and I totally get where you're coming from as you're still only 35. Shame your consultant was dismissive. You might see someone else who is a bit more understanding in future? Or could you have a chat with your GP?

Someone I know with glaucoma recently had a procedure to correct the droop on one of her eyes on the NHS but she has limited vision so I'm not sure if they'd have offered otherwise.

[Dabs2024 in reply to whitedog]

Thanks so much for replying. This is all new information to me so really useful.

[floki7 in reply to Dabs2024]

I had a trab in my right eye 3 years ago which resulted in blurred vision and a cataract, in June of this year I was told I need a bleb revision urgently within 2 weeks, well I had it done on the 19th Dec last week, 6 months late despite phone calls to the clinic, when I went and saw the consultant a week before she asked why I had not had it done sooner I replied that we were told that we were on the waiting list, she is making an official complaint. Went for a post op check up on the day after, 20th, and was told the bleb is still leaking so got padded up again and now got to have more stitches put in tomorrow 3rd, then take 9 drops a day for a month and antibiotic ointment 5 times a day for a month, and was told this op I had done may make the trab, not work anymore, so will need that done again. But I am not going through all this again, I really would prefer to have my eye removed, over and done with. I'm 73 so, not as if I need to work, and don't enjoy driving anymore. Colour of eyes did not change but eyelid now is almost closed from drooping. Good luck.

[Dabs2024 in reply to floki7]

In sorry to hear you’ve been through all this. 6 months to wait for urgent treatment isn’t good. I’m glad they are following that up for you. I totally understand what you’re saying about giving up with treatment. I worry about what my eyes will be like in 20 years time and although the trab brings the pressures down and helps in the long term it seems that more often then got, it comes with a new bag of problems. I have to rely on my glasses for short distance as well as long distance now, since my vision has blurred. I’m not sure if this is because of the trab or the needling. Apparently it will get better, but so far it has only got worse. Best of luck to you.

[floki7 in reply to Dabs2024]

Thank you, good luck on this unpleasant journey, my "good eye " has been slightly blurry since diagnosed with Glaucoma in 2006, but the blurred vision in my, or what was my better eye only got worse with Trab surgery, so I am now going to have to wait for cataract surgery next year, trouble is I really need new glasses for reading etc, but the opticians say it would be a waste of money as it will not make any difference to the bad eye, so have to play the waiting gams, again.

[Sodalover]

Hi, I was only diagnosed in March this year, I haven’t had surgery but have to use drops to lower the pressure. I only have glaucoma in one eye and have noticed a change in the appearance of that eye, I was warned my eye colour could change and eyelashes become darker, thicker and longer. I have hazel eyes my right eye is now noticeably different, brown with long thick very black lashes, the eyelid also droops slightly. Other people have noticed too, so I know I’m not exaggerating it. I have an appointment on 30 December and will be asking about the droop as it really bothers me. I hope you get some better advice at your next appointment.

[Dabs2024 in reply to Sodalover]

Thank you - it’s reassuring to find out it’s not in my head and that you were warned about the changes. I will talk to my consultant about it at my next appointment. My concern is that it’s only going to get worse. I’m only 35 and likely to need continuous treatment throughout my life. Best of luck to you with your eye.

[Dabs2024 in reply to Sodalover]

Could you tell me what drops you are taking? Is it one particular type that seems to cause the change? Good luck at your appointment. Please let me know how it goes, if you’re happy to.

[Sodalover in reply to Dabs2024]

I’m currently prescribed Monopost drops, these are the ones I was told could cause the changes, I also use Theoloz duo drops for dry eyes. I’ll update after my appointment tomorrow

[Sodalover in reply to Dabs2024]

Had my appointment yesterday and have come away really worried, the consultant says my test results and sight loss are not consistent with straightforward Glaucoma, when pushed for possible diagnosis he said they needed results of MRI and a referral to a neurologist, but they would want to rule out brain tumour, stroke and Multiple Sclerosis. Now waiting for an urgent MRI and feeling very worried

[Dabs2024 in reply to Sodalover]

Hello Sodalover.

Im sorry to hear this and totally understand that you’re worried. I hope that you get your appointment soon so that you can get some answers.

What was abnormal about your test results? Has your sight loss happened quite quickly? How were your pressure? When was your last appointment? Sending you all the positive vibes. Please keep me updated, I’ll be thinking of you.

[Laura7777]

Hello Dabs

As others have said, some drops change the colour of the eyes/affect the lashes/cause dark areas around eyes. Remember though, that the drops are controlling your pressures and so saving your eyesight but if it really bothers you, talk to your consultant. Perhaps alternate drops can be found for you.

Like you, I was diagnosed with glaucoma at a young age - 28. I had lost all my peripheral vision by diagnosis and had just 5% of central vision left. I had Trabs in both eyes and have been on 3, sometimes 4 different drops at a time, plus Diamox capsules, ever since. I am now 68 so that makes it almost 40 years.

My eye colour changed and my lids became droopy quite quickly after starting treament but different drops were not as effective at controlling the pressures for me. I chose to stay on the drops that caused the eye changes as I felt that was the best way of preserving the rest of my eyesight, and I found that after the initial changes, no further changes occured.

The changes bothered me a lot at first but I found I got used to it. But there were so many changes at that time, the biggest ones being I had to give up driving, I had to retire from work and I had to decide if it was fair to my fiance to get married. To be honest, I was more afraid of the future and going completely blind than any changes in my eyes.

It is a lot to take in when you are first diagnosed with glaucoma and it has obviosly been a lonely and bewildering time for you. I sympathise with you and I hope you find help on this Forum. I also found it helpful talking to the Glaucoma Association (as it was then) and you might find a chat with them infromative and reassuring in the New Year (Tel [phone]). It is not all doom and gloom though. Here I am, some 40 years on from diagnosis and I still have my last bit of sight and my eye changes have not got any worse. And yes, I did get married and my husband has been so very supportive.

Sorry for the long post. If there is anything I can help you with, please let me know.

Best Wishes, Laura

[Dabs2024 in reply to Laura7777]

Hi Laura,

Merry Christmas!

Thank you so much for your very honest and informative reply. I really appreciate it.

I’m so sorry that you have had such a difficult experience from such a young age. Thank you for sharing your experience - I feel exactly the same and I feel reassured to know that I’m not the only one. I’m very scared about the future and constantly wonder how different my life will be in 20 years time. On a positive note, I find that I appreciate life a lot more now and spend more time enjoying things which I would have taken for granted before, such as a sunset or autumn leaves. I’ve learned to enjoy the ‘little things’ more.

I’ve also considered how it will impact my partner who I’m engaged to and it almost stopped me from having a baby as I didn’t want to risk passing on the gene. It’s constantly in the background of every decision and life choice you make. Your husband sounds wonderfully supportive and I feel lucky to have a good support system too.

Sending you best wishes for the future.

[BeeLib]

Hi Dabs2024 a lot for you to cope with / get your head around. It’s a bumpy old road this! As others have said, drops can change appearance of eyes- colour & lashes. Mine do look different to each other. I notice, but fortunately for me, most others don’t yet. Please do raise any concerns you have at your next appointment. Do you have someone who could go with you? I feel I learned that I need to try to have some control over the appointments- ask all that I want to ask (take my list!), ask if things can be checked with the consultant, ask for what is happening to be explained to me- every time. I have to push to get appointments at the moment too which takes energy. But I’m over 20 years living with closed angle glaucoma with loss of peripheral vision, Still swing at times between being so so grateful that I still have reasonable sight & living a pretty full life (bumpy road at times) to sadness/ frustration/ anger as why me & also that optician missed it- did I not try hard enough etc, what will happen in the future etc. All these are valid I guess.

If you need any further procedures, Glaucoma Uk advertise a buddy system, details here glaucoma.uk/care-support/bu... Does your eye department have a Patient Support service? Might be worth finding out.

I wish you well going forward. I’m still doing many of the things I enjoy & having wee laughs along the way. I hope you can keep doing things you enjoy or find new things. It’s really important to keep being out there - but it’s easier to do with good treatment/ support.

With very best wishes, Beth

[Dabs2024 in reply to BeeLib]

Hi Beth,

Merry Christmas! Thank you for your reply. I feel exactly the same - grateful it’s nothing worse yet frustrated that it’s changing my life.

I always take my partner to my appointments - like you said there is so much to take in and I always forget to ask what I need to find out. I have raised my eye changes before but the consultant disagreed with me and said it looks ‘normal’. That was difficult for me as I felt like I was overreacting but also unsupported. I am getting better at asking for a second opinion and asking for things to be explained until they make sense. Without distracting anyone on here, I really feel for the older patients who also have hearing difficulties and may not be able to get the answers they need. The eye department always seems to rush you in and out of appointments and I do worry that older patients are not being looked after like they should be. On the other hand, I have seen some wonderful doctors and nurses who really take the time to help the older patients.

I will look into the buddy system - thanks. Not sure about patient support but I will also look into this.

Best wishes for the future, Abi.

[KirstyF28]

Hi Dabs,

You and I have some similarities in that we are both 35 and have glaucoma in both eyes. I was diagnosed when I was 13 and have had a lot of surgery over the last 21 years. It can be very overwhelming at times and those close to us don’t always understand how much in can impact us emotionally.

I obviously can’t comment on the appearance of your eyes post surgery, but I also struggle with image concerns relating to my eyes. I too would avoid photos and seek reassurance from friends and family. I would constantly check my eyes in mirrors or avoid them completely and compare my eyes to previous photos. I see a therapist for this and it has changed my life. Our ophthalmologists are so focused on making sure we don’t lose any more vision that aesthetics are a lower priority and this can sometimes feel like they are dismissing our concerns.

What I’ve realised is, my eye condition and disability is out of my control and the only thing I can focus on is how my eyes ‘look’. Nobody wants to look ‘different’ or for their health condition to be obvious to the outside world and this is tricky when your eyes are the first thing people see when they communicate with us.

I think it’s really normal to hyper focus on how your eyes may have changed since the surgery and that can be quite distressing. However, if you’re avoiding photos, checking in the mirror and seeking reassurance from friends and family, it may help you to seek further support. The problem is, if you look for a flaw, 9/10 you will find it, whether or not it exists. Our brains are great at playing tricks on us and it thinks it is helping us or keeping us safe by providing the evidence we’re seeking.

If you’re taking latanoprost (monopost) eyedrops this can cause a ptosis or droopy eyelid and can cause lighter colour eyes to turn brown over time. Surgery can also cause a ptosis but this can be surgically corrected. I have had to have this done to both eyes.

Living with an eye condition is an ongoing journey and it is not an easy one. Remember that being diagnosed with sight loss is traumatic and our minds may try and deal with this trauma in unhelpful ways.

I hope this helps in some way.

[Dabs2024 in reply to KirstyF28]

Hi Kirsty,

Thank you for your reply. Everything you have said makes sense and it’s so good to speak to people who are similar to me and understand .

Thank you for the information - it’s really helpful. How is your vision now? I have dark brown eyes which are becoming lighter. It’s something I know I will get used to. Its all the uncertainty and lack of understanding I have which is causing me worry, but this forum and you guys have really helped me.

Best wishes for the future, Abi.

[KirstyF28]

Just to add, please don’t think I am being dismissive of any eye changes or suggesting they are only in your head.

[Goatiegoat]

After many years of glaucoma, I have a very droopy eyelid to my left eye too. I think it’s called pthisis. I suppose I’d have been more worried when I was younger but now I’m just very grateful to have working eyes. You are probably much more aware of the appearance of your eyes than other people are. There is, I think, an operation to lift the eyelid.

[muddledme]

Hello Dabs2024,

I was aware of a droopy eyelid following glaucoma surgery in 2020. The same op on the other eye did not have this problem. After about a year this lid did return to normal. Now I have recently had another op on the same eye and the droop has returned, the surgeon did say that if it started to interfere with vision then it was possible to have it fixed. So I will wait and see if it slowly reverts back to normal.

Best wishes

[Dabs2024 in reply to muddledme]

Thank you. Best wishes for your recovery.