Trabeculectomy

[squirrel70]

Hi,

Just had a field vision test showing more sight loss in 1 eye and increased pressure.

I have been on latanoprost and timolol but consultant has now added brinzolomide but tells me if that does not help I need a trabulectomy. (Which he longer does as not now working for NHS)

My concern is that as waiting lists are so long and health insurance does not cover glaucoma, has anyone self financed this procedure and what were the costs ?

Anyone know of any successful alternatives to trap ?

Thanks everyone

[Hidden]

Hello..... I recently had a goniotomy combined with cataract removal for increasing pressure and thinning in right eye. As yet I don't have any vision loss. It seems to have worked in reducing the pressure and is a minimally invasive procedure.As far as NHS treatment versus private.... I guess it depends a bit on where you live. So far I have stayed with the NHS as although the eye hospital seems chaotic at times and the consultants are less than communicative, I have received prompt care related to the seriousness of the need. I have been seen regularly, latterly every few weeks.

[Ritualhazard]

A friend of mine had a private trab and I’m looking into it too. She told me she paid around £5K for it

[squirrel70 in reply to Ritualhazard]

Thanks for letting me know, I have heard of people losing their sight due to long waits for eye surgery. I'm in the south west, not sure it's as bad everywhere.

[Ritualhazard in reply to squirrel70]

To be honest, I’m also considering it due to the continuity of care. The local eye hospital is great, they have saved my sight after angle closure but I see someone different each time and my glaucoma is complex. Having someone who understands it and can take a broader view is important to me.

[Ritualhazard]

One other thing to add. It doesn’t sound like you’re maxed out on drops yet so if there is a long wait make sure you push for everything you can have to control your pressures while you wait. I’m on Latanoprost, Dorzolamide (like brinzolamide) and brimonidine. You still have medical options

[squirrel70 in reply to Ritualhazard]

I quite agree with the continuity issue and it's so busy at the hospital there is a rushed "conveyer belt" atmosphere and asking questions is discouraged due to this.

For that reason I see a consultant privately.

None of the drops seem to have slowed the progression of my glaucoma so far which is a worry.

[JanD236 in reply to squirrel70]

Yes I self financed a trab and was very glad I did when I compared the after care I received with that received by my mum on the nhs. I had many more appointments in the days and weeks post op and each time something was adjusted (the steroid drops or the stitches).

I had a similar worrying time like you when various combinations of drops were being tried out but I was losing sight.

The trab has kept the pressure around 8 since it was carried out about 8 years ago. The pressure in the other eye is kept at around 14 with what I understand are ‘maximal meds’ which is Cosopt twice a day and Monopost at bedtime.

I’m pleased to say that my sight has been stable ever since.

I self fund twice yearly check ups. Perhaps if any sight loss was reversible I wouldn’t feel the need to self fund but as it isn’t I feel it’s worth me making sacrifices to see the private consultant. I’m very grateful I’m able to do this.

[squirrel70 in reply to JanD236]

Thanks so much for telling me that, I feel more confident going forward now and will follow your lead and hope for the same outcome.

[Cornwalleyes]

Hi I’m in the SW too, My initial problems were covered by insurance so I went privately. The consultant was fine, but the private hospital used the next door NHS equipment, their visual field machine was ancient and the laser machine they used kept breaking down…. So despite the extra cost and travel time I now travel 100’s of miles to see a consultant. When I had my first VF test privately the results were much better!! It’s really important that you like and trust your consultant and that they answer your queries. I have a trabulectomy at the end of the month and with all the follow up appointments, that’s one a week for 4 weeks, then two fortnightly, it’s costing around £4.5k - luckily for me I’m still covered by insurance, except for any prescriptions. Good luck.

[squirrel70 in reply to Cornwalleyes]

Hi, thanks for telling me your story, you're very lucky to get health cover, my insurer didn't want to know as glaucoma is a chronic condition.

I have been seeing Adam Booth ( ex royal eye infirmary Derriford) privately as he no longer works for the NHS and he doesn''t do surgery now either.

I'd be very interested to know who you are seeing as I will have to find another consultant to do the trab .

(I'm in Cornwall too)

Please let me know how you get on with your trab, good luck.

[Cornwalleyes in reply to squirrel70]

Hi I go up to Moorfields, my husband works in London in the week so I get to see him midweek when I have an appointment! The insurers obviously don’t pay any travel or other expenses and they didn’t pay for the 6 monthly check ups, but they did cover the initial diagnosis and will cover any new treatment. I figured if it’s 100 miles for me to get to Exeter or Plymouth I might as well go to London. My poor experiences were all at Treliske and then the fact that the Duchy private hospital still use Treliske equipment. I also like the fact that any profit Moorfields private makes goes back into the NHS part of the hospital. I think there is an eye clinic in Exeter, might be worth looking at that.

[squirrel70 in reply to Cornwalleyes]

Thanks very much, I'm sure they're very good at Moorfields.