Decline treatment?

[YogaLover]

I am extremely anxious about my upcoming trabeculectomy and am almost at the point of declining treatment and let nature take its course.

I have done a huge amount of research and also had a private consultation and remain unconvinced that this is the correct course of action for me.

In the eye to be operated on I have very little vision (low pressure glaucoma) plus macular degeneration and fear that the trauma of surgery could worsen the situation. They are operating on my worst eye first to see if successful (!) before doing the other which has less vision loss.

My stress levels are sky high which is probably not good …

[Astilbe]

Oh poor you, what a dilemma! I have had those, for a different reason to you.I wonder why they are doing a trabulectomy when you have low pressures anyway. Mine have been done to lower eye pressure. But then I would have to research why they recommend it.

I assume they have told you why they recommend trabulectomy?

[YogaLover in reply to Astilbe]

Thanks for your reply. I hope you resolved your issues? All other inventions have failed and this is next level. Normal tension glaucoma can be very difficult to control and sight loss can progress despite treatment.

[Sufitzy]

only you can decide what is best for you but speak with the consultant or maybe email them explaining g how you feel. You could speak with PALS if you are not confident that your concerns are being heard .

Also the glaucoma help line has been very supportive to me in the past.

It’s a horribly choice and folk here are thinking of you x

[Billericaymickey]

Hi I thought I would share my experience as I also have low pressure glaucoma.

I had my op during Covid (March 2020) after having switched from private treatment to NHS - I recall that the surgeon was quite frustrated that my previous consultant had not acted sooner, previous laser treatment was unsuccessful.

My vision loss in my left eye is extensive so the trabeculectomy was done to prevent it deteriorating any further, yes I was nervous about the op which is quite normal but all went well.

Pressure in that eye settled down very quickly and has remained stable at around 7/8 compared to my (good) right eye which is around 12-14. I am on a 6 monthly check-up programme. Eye drops in my right eye only since the op - medical driving licence valid for 3 years.

Whichever way you decide to go I thought it would be of some value to share my own experience

Going home - post op

[ChewyR]

hi YogaLover, I feel for you. Can I ask why you feel convinced it’s not the right treatment for you, is that reasoning following your research? I also have normal tension glaucoma in both eyes and consultants are keen to do a trabulectomy -I am undecided and on drops but they say the treatment is the same for glaucoma even though pressures are not overly high. It’s more to do with ocular blood flow, I am not sure if it’s possible to improve OBF in order to improve the eye pressures! It’s not been discussed or touched on in appointments. So I am continuing to exercise to help things. I talked to someone yesterday that reassured me the trabulectomy is nothing to worry about and it could help slow down further vision loss. I hope you make a decision that is right for you ❤️

[Crafty-gran]

I’m so sorry you feel so anxious. I completely understand . Your eyes are very precious and nobody really wants to undergo surgery .

I’ve just had my second cataract and I stent surgery done yesterday for NTG with the hope it stops the progression . I know that if it continues to progress I will need a trabulectomy . Something I really don’t want to have to have but I’m trusting the consultant snd team to do what’s best to save my sight .

We all do our research online and some times information can be confusing and contradicting.

I would talk through your concerns with your consultant .take some one with you. Write down your questions

I feel for you and hope you feel a bit better by sharing your concerns in here

Big hugs

[whitedog]

Hi

Having lost vision in my right and experienced the discomfort of high pressures I think that would sway me into having the surgery as, though I'm 'blind' in my right, I do have a tiny bit of vision that is probably more useful to me than I appreciate. That's after laser, trab, shunt and multiple drops.

I still use two drops and those together with the shunt have kept my pressures stable at between 9-11 for years now. But, luckily I still have vision in my left.

So, I would be thinking, what does 'letting nature take its course' mean in practical terms?

It would mean risking high pressures which can not just be uncomfortable but they'd likely take away what little sight you have left which you might have saved with surgery. And also doesn't give the surgeon any idea of how successful a trab on your other eye might be.

But after that? I'm not sure. Would there be further health consequences?

All the best with whatever you choose but I tend to think that a surgeon wouldn't operate unless they really believed it was the right thing to do.

[Rainyday2024]

Hello YogaLover, I can understand what you mean about “letting nature take its course” as I felt the same way this time last year! I was not a suitable case for a trab. for various reasons, so my consultant recommended a Paul Tube implant. I have written several posts on here previously about this, which you may find helpful. I was so scared of having an operation, plus there was no guarantee it could save what little sight I had left in my right eye. I put it off for ages, thinking I might as well “let nature take its course” and if I did go blind, well I still had the other eye! Then I came to my senses and after a long consultation, listening to all the various risks, I decided to bite the bullet and go ahead with the op. That was at the end of April last year. It’s been a long recovery, with lots of drops following the op - plus many visits and check-ups, but at one on my last eye tests, the consultant said my vision had improved!! It will never be 20/20 vision, but then having been extremely short-sighted all my life, I’ve learnt to life with it. I just wanted to try and reassure you by sharing my own journey. Kind regards, Gill x

[Laura7777]

Hello YogaLover,

I am so sorry to hear of your terrible dilemma, my heart goes out to you.

My NTG was missed when I ws first diagnosed and my pressures were considered acceptable. I continued to lose sight and when it got to 5% of central vision left in each eye they realised that something else was going on and NTG was diagnosed. I had trabs on both eyes, the first one to see if my eye could take it and the second 3 months later. They both went well and the trabs and drops have worked to keep that small bit of sight I have left. That was some 38 years ago.

Yes, I was frightened that the trabs would make me completely blind and I was terrifeid that without them I would continue to lose my eyesight as drops alone were not stopping me lose more sight. I was nearly 30 and I felt my life was over as I knew it. I felt I had no real choice but to go for the trabs and I'm glad I did. They are still working today and without them (and the drops etc I have have continued to take over the years) I am sure I would be completely blind now. I get more than get by on my 5% of central vision.

You have a hard decision to make as many of us have had to do. It is a personal decision though and it is omportant that you are happy with your choice. I wish you well in whatever you decide.