post-trabeculectomy

[gardenvolunteer]

I had a trabeculectomy in my L eye three weeks ago, and found it a distressing experience. Even though my eye was anaesthetised, so I was not in pain, I found it very difficult to lie on the table for a long time and accept that someone was putting a knife in my eye. The speculum which holds your eye open was also very painful; I have osteopenia and I kept thinking that my eye socket was going to be damaged. The doctors were defensive when I talked about what I had experienced. I wasn't tryng to blame them; I just wanted them to know how patients feel. They have mentioned doing my other eye when this one has healed. I am not sure I want to go through this operation again. Has anyone else had a similar experience with trabeculectomy?

[Longwalks3]

I had a trabeculectomy and several major revisions done on my left eye under local anaesthetic and did not find it a pleasant experience although probably not as traumatic as it obviously was for you. The procedure is sometimes done under a general anaesthetic - my sister had both her eyes done this way. I would be possible to ask for this but obviously various things such as your age and general health would need to be considered. The other thing I did during one of my procedures when I was very anxious, was to ask one of the nurses to hold my hand. It may sound a trivial thing but I found it very reassuring and she was very glad to do it. In general I have found nurses very kind and supportive - more so than the doctor who is very caught up in the technicalities of the procedure and often doesn’t really have time to think about the emotions of the patient.

[gardenvolunteer in reply to Longwalks3]

thank you for that response. I agree about nurses being supportive, but still think it's important that doctors also have a sense of patients as people as well as objects of procedures.

[KayGeeBee]

I've been in theatre three times, not for a trab but for similar procedures. Each time I asked for, and was given, sedation. The first time I was told they kept it light and I was aware of what was going on during the operation, but it took the edge off the anxiety. The other two times I was seemingly knocked out completely which was wonderful and I came round quickly once the operation was over. I'd recommend asking if you can have sedation.

[gardenvolunteer in reply to KayGeeBee]

Thank you, yes, I was thinking about asking for sedation rather than a general anaesthetic. I have had that for a dental procedure, and it worked very well. I will bear it in mind if they suggest any further work.

[Granny79]

I had a Trabelectomy in my right eye three weeks ago. I found it one of the most unpleasant things I have had done. Firstly there was very little info from the hospital when I went for my pre op. The booklet I had from Glaucoma Uk was far more informative, however it did not prepare me for the two hour procedure I had on my eye. I have difficulty lying on my back anyway, but not two hours. I was very frightened. Not once during that time did anyone ask me if I was Ok. I did feel quite a bit of pain, but as I thought it was only an hours operation I kept thinking it will all be over in a minute. I know I was silently crying and came out an emotional wreck.

Would I ever have the other eye done if it was needed. NO absolutely not.

[gardenvolunteer in reply to Granny79]

I am sorry you had such a bad experience; sounds far worse than mine. But I think we do share that the information given beforehand doesn't really prepare you for the experience. I think this is something that ophthalmologists need to review before offering this procedure.

[Granny79 in reply to gardenvolunteer]

I agree with you re the information. Previously I had a Cataract op on the same eye and the information for that. I was told in depth what would happen and how long it would take, but for the Trab virtually nothing. Considering where I had the ops done this is a Major Eye Hospital.

Even the follow ups are very vague with little information. I had a checkup the next day, then one week on, another week on from that where the person I saw said I would be seen in two weeks. Letter came with the appointment for three weeks from last visit.

[AlfredV]

Both of my trabs were under general because of anticipated complications. That said, I've had two needling procedures in theatre under local and both with the same surgeon. The first was a breeze whereas the second was really uncomfortable and quite brutal. During the first the speculum provided no discomfort, whereas the second the speculum was hugely uncomfortable. I really have no idea why.

It's good that you've got it over and done with. Hopefully you'll soon achieve low and stable pressures. Be patient with the recovery, I noticed vision improvements even 12 months after the event.

[gardenvolunteer in reply to AlfredV]

Thank you for being reassuring about recovery. I've already got a reduced visual field so need what's left to be as good as possible.I will mention the speculum to the doctors as I think they probably don't realise how uncomfortable it can be.

[Jeffvader]

I have had a couple of procedures under local and I have found them uncomfortable but not too bad. My first was an emergency operation last year and so I didn't really have time to prepare or overthink it. I found the doctors to be fine, asking questions and generally checking in on me. However the support staff I had were amazing. I had one lovely lady hold my hand until I was settled, and the would come over and occasionally hold my hand or just rub the back of my hand to make sure I knew somebody was there. I also suffer from minor claustrophobia and when they covered up the left hand side of my face I struggled. They instantly recognises this and propped it up so I could see out and not feel enclosed in. I had another procedure yesterday and it was exactly the same, even though this time I knew it was coming and so slightly more anxious.

Let's be honest these operations are generally horrendous and not at all pleasant but the nurses and doctors at Bristol Eye Hospital did a fine job getting me through it.

[gardenvolunteer in reply to Jeffvader]

Well, they sound good in Bristol. But your comment that the procedures aren't pleasant does bring me back to wanting more explanation about what the choices might be for different procedures, their success rate and what the outcomes might be, so that you can choose whether or not to have them. I suspect the doctors think that people might get too anxious with too much information, but I still feel I would like to know.

[Jeffvader in reply to gardenvolunteer]

I have always found things to do with my eyes quite squeamish to be honest. I used to struggle putting eye drops when I first started, but after 15+ years I've got more accustomed to it. If it's all new to you then I suspect you are like me when it first started, I really didn't like it.

When I had my first operation they numbed my eye in the pre op room, and then wheeled me through to theatre where they put a cover on my face and then clamped my eye open. I didn't even really feel it or even think about it as it was all new to me and as it was an emergency operation I didn't have time to research etc.

Yesterday was different, they clamped my eye in pre op and then wheeled me in. However as uncomfortable it felt, they had numbed my eye sufficiently that it didn't really bother me. I knew what they were doing but as there was no pain or feeling, it felt ok. Unpleasant if I thought about but I tried to think of other things while it was all going on.

I wonder whether you have enough numbing agent?

As for choices I have often thought the same. My original surgery was on the back of failed SLT which sent my pressures sky high and did a lot of damage. Even though I would have preferred surgery at the time I was told it was the sensible path to avoid surgery where necessary. They seem to follow a script as I had a private consultation a few months ago and the doctor agreed that he would have done the same. Often these decisions seems rushed on the NHS however I will say spending time with a private doctor was worth it as he talked me through a lot of things, including what future options might be.

Ultimately you do have the choice not to proceed with their recommendation, but the damage will often continue. There was a guy before me who has had a few surgeries and he said this would be his last as he has had enough of it. It all depends on your life etc

[Granny79 in reply to Jeffvader]

I had mine done at Bristol Eye Hospital. See my comments above.

[Toscaninni]

Hi, sorry to hear that you found the operation difficult as did many others who also commented in their posts. However it could be unfortunate if those waiting for such an operation thought this was always going to be the case. I had my trab done by the Anglia Eye Community Service (rather than the hospital). I wasn't anxious about the operation and it went very smoothly. It wasn't uncomfortable at any time: I was well anesthetised and I could have drifted off to sleep during the operation.

I later had cataract operations, one of which had to be redone and this was pretty uncomforatble, but the trab was just fine. The trab operation saved my sight. In my other eye, I have lost nearly all my sight. I'm so glad I had the operation and I wish I had had both eyes done.

[Iloveweighttraining in reply to Toscaninni]

Hi.

I had a Trab in May on my Right eye under general and all was good ,pressure went down to between 6 and 7 and is now stable .I have noticed with my right eye that my vision is still not back to where it was but ,no more eye drops in that eye however, i also have Glaucoma in the left eye and was asked when i wanted that one done ,there is no way i'm having that eye done until the other eye recovers .I dont know how long the healing takes but ,hope it sorts itself out soon .

Good luck to all of you that have undergone procedures and are in the process of healing.

[muddledme]

Hello gardenvolunteer,

So sorry to hear of your experience of surgery.

I have had two Preserflo shunts implanted , both taking an hour and with a local anaesthetic.

I agree with jeffvader that you may not have been given enough local .

At the beginning of surgery it is worth getting really comfortable , asking for extra blankets, neck cushions etc as the surgeon finds it much easier to operate if the patient is able to lie still.

Perhaps I was lucky at Taunton hospital where all the staff were very kind and helpful. Towards the end of one operation I did begin to feel some sensation in the eye so I raised my arm and they gave me some more anaesthetic which worked almost immediatly.

The only poor experience I had was one SLT and I realise that it was probably again not enough anaesthetic.The first SLT was totally painless.

I am very pleased with my shunts but have learnt that it is very important to say when things are painful, similar to when you are in the dentist. This empowers you to be in control !

Best wishes

[gardenvolunteer in reply to muddledme]

Such a variety of experience! I feel better prepared for choices in the future. Thank you Toscanini for making a good point that I don't want people to be put off an operation if it is going to be helpful. All the responses indicate to me is that what we really want is not to refuse procedures, but just to have lots of information and time beforehand to think about how to go through them.

[HMThai]

Sending good wishes and calming thoughts.... Good Morning from faraway Thailand!