Trabeculectomy surgery fear and changes to eyes appearance

[Bonniecat7]

Hi,

I've recently been told I need trabeculectomy surgery for my normal tension glaucoma. I'm terrified! On top of the fear of the actual procedure I'm worried that it might change the appearance of my eye. Does it? I'm trying very hard not to be vane about it but I'm only 44 and my eyes have always been the only part of my body that I like!

I have seen a post on here suggesting there might be a newer procedure but can't find any details about it. Does anyone have any information? I'm learning that the medics don't necessarily tell you about all available treatments (I wasn't told about SLT by my first opthalmologist, I only found out from glaucoma UK after having adverse side affects from the eye drops)

Thanks in advance,

Charlie

[muddledme]

Hello Bonniecat7,

Although I do not live your way I have Normal tension glaucoma and had two Preserflo microshunt operations implanted since Dec 20. Apparently this is similar to Trabeculectomy but slightly less invasive. Your consultant has probably thought that a Trab may be more suitable for you.

Both operations were with a local anaesthetic and I was surprised at how painless they were. Probably the most onerous bit is instilling many frequent eye drops afterwards, also restricted bending, lifting and strenuous activity for a few weeks post op.

It is nearly a year since my last op and I do not need to use any regular eye drops only lubricating drops, mostly in the colder months. One eyelid was slightly droopy post op but this has now recovered.

My eyes look much better now without all the redness I had from the Simbrinza drops.

(Some people used to think I had been crying !!)

You can ask the Gaucoma UK helpline for a 'buddy ', someone who has been through surgery and so can help to answer questions and perhaps add some useful tips.

Also I think it is worth downloading the Gaucoma UK leaflets and getting all the information you can from the eye department at the hospital. You should be given an appointment to see a nurse a few weeks before an operation , they are usually very helpful.

The NHS were excellent and I am so grateful for all their expertise and kindness.

I hope that when you find out about the surgery it will give you more confidence and you may then feel more positive.

Very best wishes.

[Bonniecat7 in reply to muddledme]

Thank you for your reply muddledme. It's good to hear about a different procedure so I can ask my surgeon about it.

Unfortunately I feel like I have been failed by the NHS repeatedly since I was first referred to an opthalmologist over 18 months ago. Despite suffering side effects of several eyedrops I wasn't offered SLT. When I found out about it through glaucoma UK I asked her about it and sh said she hadn't mentioned it to me as an option because she doesn't do it! She referred me on to someone else and it was only then that I found out the vision loss was so bad in my left eye that he felt I needed surgery. He also sent me to a neuroopthalmologist for further investigations. They were shocked that I hadn't had an MRI scan given my age and other symptoms! I had SLT in my one eye whilst waiting for this but it didn't work. Worse still the salt surgeon prescribed me extra eye drops at double the correct dosage because my notes were in such a muddle and she clearly was unfamiliar with the medications! I have now had the all clear from MRI but it has taken so very long between appointments, it is now a whole year on from when I first started eyedrops and I can see the blind spot has got much bigger in that time.

Unfortunately I have lost all faith in the specialists, so feel I really need to research thoroughly to make sure I have been told about all of the options available, so you can make informed choices. I'm really struggling to put my trust in anyone enough to cut open my eyeball

🤨

[Hidden in reply to Bonniecat7]

Bonniecat7 I can totally understand your loss of faith and lack of trust at the moment. Your treatment hasn't exactly been ideal or consistent,it sounds like it's been a bit of a nightmare for you.I've had 2 trabs one a year ago , one 10 weeks ago. Eye drops weren't keeping my eye pressure low enough and I had already lost vision. After my first trab my eyelid was droopy for a few weeks but then settled down and with my recent trab, no drooping at all. My eyes actually look like mine again for the first time in nearly 3 years.

I am now on no eye drops at all and my pressures are 14/16 which is perfect for me.

An eye op is a scary thought but in reality the thought is scarier than the actual procedure.

Take care

[Hidden in reply to Bonniecat7]

Perhaps it's worth asking for a second opinion at another hospital? Maybe Moorfields if you live near enough to get there. It sounds as though you have had a terrible time. My local eye department has been chaotic in the last two years and short of staff as well.... I think the cause is a mixture of covid problems and staff leaving because of brexit.

[Redshoes15]

Hi Bonniecat, I can confirm what others have said about the trabeculectomy. I had one done last May and my eye now looks fine, in fact my husband says it looks better than the one I put drops in! The pressure in my operated eye has remained at 12 without drops, which is great. I am due to have the other eye done soon and if this is ok I will be able to stop all drops in that eye too. As for the op itself, it really isn’t anything to worry about. You will have lots of drops to put in afterwards and not do anything strenuous for 6-8 weeks, but then you will be good to go! Good luck xx

[muddledme]

So sorry to hear about your hospital experiences during Covid.

I have also had some poor experiences with the NHS. Usually I find that it is the system rather than the staff at fault. Overwhelmed with patients, hundreds of thousands of staff shortages and at my hospital not even enough rooms.

Once I had to travel to Southend from Somerset to get a diagnosis of a suspected serious disease, as although Bristol and Exeter did the test I was not in their post code. I e mailed a world renowned physician in Essex and he saw me , and everything was negative....just at the start of Covid !

You do seem to be finding out all you can , essential these days. I found it all gradually became a little clearer. One of the best things for me has been the Glaucoma UK webinars, where all the speakers have been very helpful and it is possible to ask general questions.

It may be worth asking your optitian about the various opthalmic consultants around , also I tend to chat to patients in the OPD waiting room. Once I asked the nurses which medic I was seeing in the eye clinic and could I swap to one I knew ( and was good ) She was quite happy to oblige.

It does sometimes feel like a battle, but there are some excellent medics out there.

Do hope you get some good treatment soon.

Best wishes

[Justinealexx]

I've also had SLT around 15 months ago with great success. Pressure from 32 to around 14 now and stable ever since. The procedure was quick at under 15 minutes, a little uncomfortable, just some slight stinging that soon settled. It has to beat those drops every day!

[Bonniecat7 in reply to Justinealexx]

Hi Justine,I'm so glad the SLT worked for you. I have already had it and unfortunately it did not work, hence I am having to have the surgery.