Possible trabeculectomy

[Ivybeaucotswolds]

Hi, I am 52 and have had Glaucoma for 8 years, I have a strong family history of Gluacoma . I am fit and enjoy running /swimming etc

I have had 2 lots of SLT and on monopost daily. My pressure is mostly 15 in both eyes, however my field vision is deteriorating despite the pressure being under control.

I have been told that within the year I will need a trabeculectomy. Just wondering if anyone else in the group had a similar scenario.

Also what is the general recovery and if anyone who was in a similar situation has had a trabeculectomy which has halted further field loss vison?

The other question is are you able to see the Bleb and do you have to do anything specific on a daily basis to look after the Bleb

Many thanks in advance for any responses and support

[Ricecakesaddict]

Hi

Your post resonated strongly with me as I saw my consultant yesterday and was shocked to learn that despite being vigilant with my drops-4 X a day, my pressures have increased and are at 14-15 atm. The main concern is my loss of peripheral vision and how quickly it seems to be worsening … I have now lost 99% in both eyes and have definitely noticed a deterioration in my sight! I have been referred for urgent trabeculectomy starting with my better left eye to try slow down the sight loss! The right eye surgery will follow then cataract removal.

I am 57 and also have family history of glaucoma but unfortunately seem to be affected the worst.

I love cycling, swimming and tennis and will be devastated if I cannot continue with my hobbies. Will I be able to continue post op?

I also work full time and wear contact lenses and wonder how this surgery will impact both of these?

Finally, I’m terrified of both the operation… I have elected for general anaesthetic.. and post operative recovery as it seems from the posts on this forum to be such a mix of success and difficult recovery experiences?

I know each case is different but I have such conflicting feelings and wondered if there was any advice as it’s so scary?

I know if I decline surgery I will lose my sight quicker but as we all know surgery isn’t a cure and will only slow down sight-loss and I guess I’m just worried about my future etc.

Sorry if this all sounded a bit negative and I am truly grateful for the care I get at Bexhill hospital and my consultant is great at explaining and advising what my future looks like but it is just such a personal nightmare at times.

Thank you

[Ivybeaucotswolds in reply to Ricecakesaddict]

Hi, I have just read your response and post, thank you for sharing, I so feel for you and your situation. It sounds so similar to what I have. I totally understand all your concerns and worries which I have too and I think all our concerns are very normal. I am hoping someone on the group who has had the operation and similar scenario will be able to share some very positive outcomes from the Trabeculectomy surgery . We are lucky to have the group so we can share concerns, help and advice. I only joined the group a couple of days ago, reading posts I think post recovery returning to active sport appears to be fine for most people. When I spoke to my consultant, he said walking is fine during recovery. Like you I work full time too and I am self employed. I will follow the posts and responses , really hope everything goes well for you. I hope you continue to share your experiences as I think sharing does help . All the very best

[Ricecakesaddict in reply to Ivybeaucotswolds]

Hi… thank you for replying and it will be great to share our experiences through this great forum. Sometimes I get scared when I read some of the posts but then the balance is when the operations and treatments are successful. It just is lovely to discuss with others going through channel even though family and friends are lovely and supportive too.

Wishing you loads of success in your operation and recovery and can’t wait to hear how you and others are getting on.

[Helphelp123 in reply to Ricecakesaddict]

Sorry for asking but how are you coping having lost 99% of your vision .

[Ricecakesaddict in reply to Helphelp123]

Hi… it’s so strange as I still feel I have reasonable vision albeit more blurry and definitely deteriorating slowly I guess! I do have shortsighted and wear contacts but tend to wear my glasses more as contacts have become so uncomfortable due to all the eye drops daily.

When my consultant tells me that I’ve lost 99% peripheral vision, it’s obviously really scary to hear as I know I will never get that lost vision back and the fear of losing my sight completely unless I have surgery urgently gets overwhelming too… but I just don’t know the timeframe for this despite endless research and googling glaucoma etc…I guess that’s the hardest question to answer as each case is different.

I know the visual field tests are the true indicator of how quickly and how much vision loss I have but I always try to convince myself I’m just so rubbish at these tests due to nerves and an over-willingness to do well…probably deluded 😂😂!!

I guess we just have to trust in the diagnosis, recommended treatment etc but there is a small part of me that just wants to avoid surgical intervention and all the trauma of post op care and the continual threat of even more operations in the future.

Hope this answers your question as best I can!

[Helphelp123 in reply to Ricecakesaddict]

Thank you and sending very best wishes

[Greenwinnie]

Hi. I had a Trabeculectomy 5 years ago now, on my right eye. Overall, I’m quite pleased with it, even though I’m back on drops, & now have some vision loss in my left eye too. That bit is not related to the Trabeculectomy obviously. I think I have lost more vision in my right eye too, in spite of the op. The thing I don’t know, of course, is how much more sight I might’ve lost by now without the Trabeculectomy. I believe recovery time varies from person to person. I have a job which requires me to lift things & exercise lots daily. Because of that, I was off work for 6 weeks. Then the Consultant had to do needling a few weeks after that. Which came with another 6 weeks off work. I still think it was worth it in my case though, because I’m 5 years down the track & still have some vision. In terms of Bleb maintenance? I’ve never had to. I’m not even aware it’s there. Wishing you all the best on your journey.

[Ivybeaucotswolds]

Thank you so much for sharing your experience, it is good to know you experience 5 years post surgery . Can you see the Bleb at all? Thanks again and all the best

[whitedog in reply to Ivybeaucotswolds]

Hi

You can't see the bleb - it's high up under your upper eyelid.

There were a few complications after I had mine done. First my pressure went to zero. I could tell something wasn't right as my eye felt sunken. So back in to have some gel injected to put that right. Then I had the bleb needled. And eventually flattened as scarring due to an underlying uveitis disease caused havoc.

So then I had a tiny shunt called an Ahmed valve inserted in 2012 and it's still there. I don't feel it unless I gently run a fingertip around the area. It's under my eyelid where it meets my eye socket somewhere!

The thing with glaucoma is it's different for everyone. Different types and for some it's primary whereas for others, like me, it came secondary to another complex disease. Can be very tricky to find what works to keep the pressures low.

I have my balance now - shunt plus two lots of drops - and, unless anything changes, that's how it'll stay. Plus daily steroid drop for inflammation and now dry eye drops as well.

[Ivybeaucotswolds in reply to whitedog]

Thank you for sharing and all the very best

[Greenwinnie in reply to Ivybeaucotswolds]

No. The Bleb is well & truly hidden behind the eyelid.

[Sorshup]

From my own experience of a trab RE 5 years ago which cauased a step deyterioration in the sight, and a second trab revisio LE a month ago I would suggest you challenge your consultant on the chances of this. But I suspect my losses are related to the retrobulbar anaesthetic, which you won't have if under GA. Would a cauatious approach to be to have your less good eye done first? Also my diagnosis was >40 years ago, so maybe unfair to try to equate the likelihood of problems. Howeve, if you are deteriorating something must be done. It is interesting that we hear little of ciliary body ablatiion - can a GUK person enlighten us?

[Ivybeaucotswolds]

Thank you for sharing your experiences, all the very best

[Cornwalleyes]

I had my trabs 2 and 3 years ago, I’m lucky my eyesight is still exactly the same and the pressure has stayed at an acceptable level, so no revisions or eyedrops needed. You can’t see or feel the blebs. There is a six week recovery period when you cannot do vigorous exercise.,which is pretty frustrating, but I just walked miles instead.

[Ivybeaucotswolds]

Thank you for sharing your experience, it is great to hear your eyesight and pressure is the same. Did you have any complications? All the very best