Having a tube shunt after a trabeculectomy

[Roundearther]

I posted on here over a month ago about my progress since being hit in the eye with a football last November.

In December I had a trabeculectomy to bring down my eye pressure, it worked well for a week or two before my IOP (eye pressure) began to drop, heading down to 7, then 4 and then staying at 3.

I was unhappy with the communication and manner of the doctors I was seeing, lots of demeaning comments and I did not feel comfortable to ask questions - even though I had hypotony and my vision was getting more and more warped, distorted and weird - quite worrying.

After taking two private second opinions, I decided to try and switch care to another NHS hospital and someone managed to make it happen.

Revisions surgery was carried out over a fortnight ago to try and bring the pressure up, it worked for a week before my IOP very quickly descended and my vision returned to a totally warped and weird state. My pressure is now at 2.

I'm looking at another surgery to really tighten up the trab or a tube shunt surgery to get more control over the drainage.

Has anyone had experience of having a tube shunt after a failed trab? How did it go? Was the recovery more or less uncomfortable. I found the recovery to the trab quite difficult, lots of pain and ill after the general aesthetic.

For context I'm in my 30s.

I also wondered if anyone else had had similar complications with low pressure, any success stories to cheer me up? I'm starting to really struggle to keep up the fight. Since November my life has just been derailed by this and now I'm looking at a third surgery - I'm losing the plot a bit.

Thanks for reading and best wishes.

[Toby_from_London]

Hi Roundearther,

I’m sorry you’re struggling. While not exactly in the same position I have had micro shunt inserted followed by a revision; basically the same operation twice.

I’m obviously not a doctor but an IOP of 2 does seem very low; too low to be able to see clearly. Recover is difficult and I found the 2nd operation much more stressful as the second time around I knew what to expect!

My personal view is that the doctors play down recovery, in particular the eye drop regime, as it is rather daunting. I also had a general anaesthetic; that also takes a toll. When I woke up after the second operation the patient in the bed opposite me said “cheer up; it’s all over now” but in my view you feel it will never be over, and that a psychological issue that isn’t acknowledged by doctors, who in my experience expect you to take everything in your stride. It’s just another day in the office to them.

But I’m coming up to a year after the revision and everything looks good; my IOP has stabilised at 10. I’m sure there is going to be a positive outcome for you, but I totally understand why you feel lost at the moment. Remember there are people who share your experience that you can talk to; I myself am a Buddy so do reach out.

Wishing you all the best; I hope this helps.

[Roundearther in reply to Toby_from_London]

Dear Toby_from_London - firstly, thank you for taking the time to write back. Secondly - I could not resonate more with your comments about doctors expecting you to take everything in your stride. I feel like this all the time when I attend appointments. I say that I'm self employed so more surgery etc means I'm losing a lot of money when I can't work, I know the doctor can't do much about that, but I think it's important to explain your circumstances so they can understand you more and the pressures you are under. I'm desperate to get my life back.

I'm so pleased to hear your IOP has been so stable at 10, well done - no doubt a lot of hard work and perseverance has got you to that point.

When you say "it will never be over" - I sadly feel that feeling too. I was searching for an end to this process but I wonder if it'll just phase into my life and continue, hopefully at a more manageable rate than right now.

Good luck with everything and thanks again.

[Toby_from_London in reply to Roundearther]

Thank you for your kind words. At twice your age I unfortunately have several long term conditions so I will share what I have come to learn in the hope it may help.

My advice would be to firstly allow yourself to recover physically and emotionally a day at a time, not looking too far into the future. All emotions are valid, even negative ones such as fear and pain. Don’t try to suppress or ignore them, just work through them at your own pace. It’s difficult to accept when your life has changed dramatically so it will take time to adjust.

On a more practical note I found it useful to have someone in the consultation with me taking notes which I could refer back to later, do my own research (on reputable sites) and write down any questions I wanted to raise at my next appointment. In my experience you are at the hospital for 2-3 hours but only in the consultation for 5 minutes. When first diagnosed it can be a whirlwind of fear and confusion, words you don’t understand and decisions you’re not qualified to make.

However this forum helped me get through those early days so do reach out. You can ask to chat to a Buddy like me and use those with a shared experience to help you move through the process.

Take care.

[Goatiegoat]

I had a shunt implanted two years ago after my trab had stopped working and, like you, I then suffered a big drop in pressure. Mine went down to 4 which was causing my consultant concern. There was talk of further surgery to partially block the tube but, gradually, the pressure has risen to 6/7. This was achieved by steroid drops which in my case, since I’m a steroid responder, have driven the pressure up. I’m now facing the need to have a shunt in my other eye. Stay optimistic and trust your consultant. I think a steep drop in pressure is fairly common after shunt surgery. I remember that the same thing happened after my trab surgery but it gradually improved.

All the best.

[Roundearther in reply to Goatiegoat]

Thank you very much for your reply. I actually haven't had the shunt yet, my pressure is currently very low after a revision to my trab. It's basically been at 2/3 for around 8 weeks now. Thanks for your well wishes - I hope your situation stays stable, all the best.

[Enayim]

Dig deep and find the strength to advocate for yourself. Hypotony is a common complication but you need make sure they treat it until it resolves.I had trab surgery in 2006 . I wasn't aware of the problem and after a year of visits I was left with 5 eye pressure.

I am smarter today. I had preserflo surgery 4 weeks ago. Initially 7 the next day with distortions. 2 weeks later 9

I still have some distortions but I am going to watch it carefully.

I'm hoping that thee distortions improve.

In my opinion ( not a doctor) 7 and under, I can't see clearly and reading is difficult.

Stay in touch and cheer up. Optimism is not my default reaction but I've worked on it and it helps tremendously to get through recovery.

Good luck.

[Roundearther in reply to Enayim]

Thank you Enayim - it really is helpful to be reminded of the power of optimism and positive thinking - after months of going to hospital every week and having several surgeries - I've lost the motivation for all of this time and stress - but you are right, it can only help to be optimistic, with a dash of realism that this might trundle on for months/years.

I wish you the very best with your vision and recovery from the preserflo surgery.

[Enayim]

I have found it comforting to reach out to people dealing with a similar situation to mine. It is difficult for people to understand how difficult it is to deal with glaucoma.

[Rainyday2024]

Hello Roundearther, Although I cannot offer any advice regarding your particular situation, I was very concerned and sympathetic towards you. I hope you manage to find the correct help and that things will soon improve for you. Our eyesight is so precious and I do understand how you must be feeling. With kindest regards, Gill

[Roundearther in reply to Rainyday2024]

Thank you Rainyday2024 that's nice to read that and I feel your support. Very best to you too.

[Longwalks3]

Hi there. I feel for you! I had a failed trab in my left eye in 2018. The issue for me was that the bleb wouldn't stop leaking . This left me with very low pressure in that eye for a long time. The surgery had been difficult as the tissue in my eyes is very thin and fragile because I have a high degree of myopia and had experienced years of aggressive drop therapy. Follow up treatment was poor - my surgeon had to deal with a family emergency (entirely understandable) but I was left with no one else taking responsibility for my treatment plan. Eventually I had further revisions (very unpleasant) and the bleb did stop leaking about 6 months after the original surgery. Unfortunately it then scarred over and stopped working altogether. At this point I decided I needed to seek an alternative care provider. I had a private consultation and was advised to have Baerveldt tubes in both eyes. I had these operations in early 2020, just squeezing the second one in a week before the first covid lockdown! Both tubes are still draining well. I have had subsequent surgeries (with the same consultant) and am finally in a stable place with pressures of about 10 in both eyes. Sorry about this long rambling story. I think what I am trying to say is that glaucoma treatment can be a very long and bumpy road. I think if i had known in 2018 that it would take about 6 years to achieve stability I would have been really daunted. But I still have vision in both eyes and am leading a normal life in most respects. Be kind to yourself, make sure you trust your consultant and try to stay positive!

[USME]

I often struggle to reply. First be patient, mostly with yourself, your emotions and with your providers. Glaucoma is a very difficult, frightening diagnosis. After nearly 40 years of maior surgeries, lasers, continuing drops, infections, reading, research, hope, fear, the one thing that continues to amaze me is how different every situation can become. The response, results to treatment, drops, surgeries is so unique to everyone. Glaucoma doctors are not generally equipped to deal with all the tremendous emotional, psychological stress a patient experiences with this diagnosis and life long treatment. Do your best to find a support group. This has helped me tremendously over the past couple years. Be patient, one day at a time. Appreciate what you have today. God bless.