My old glaucoma consultant has retired and I have a new, younger consultant who seems determined that I should have a trabeculectomy. My old consultant was against it. Now not sure what to do? Any advice?
Nothing much has changed in terms of my pressure or vision, but I do use the maximum number of drops. However, pressure in normal range and I'm reluctant to fix something that I'm not sure is broke. I have glaucoma in my left eye only. Right eye doesn't have any sign of disease and isn't treated with drops. Consultant says op would be best opportunity to preserve remaining sight in left eye. However, as above nothing much has changed in terms of vision in left eye for the 15 years I've been on drops. Pressure varies a bit but is generally somewhere between 12 and 16. Consultant wants it in single figures, but it has never been that low and that hasn't caused me a problem so far! My history is that I inherited infantile cataracts from a parent, they weren't considered severe enough to remove in childhood but I was operated on in my late 20s, about ten years later I was diagnosed with secondary open angle glaucoma in left eye. To complicate matters, I'm sure I read somewhere that a trabeculectomy isn't recommended for people with my history as the failure rate is high. Sorry bit of a story, but would be interested if anyone can shed any light on my new consultant's thinking. thank you.
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BrownieBaker
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Hello, not being a medical person, I cannot begin to comment on the Consultants rationale for wanting to progress with an operation at this time. I am in a similar position in so far as I have been told one form or another of pressure reducing operation will be required for me at some point, however all the time my vision remains stable as it currently is, the consultant and I are in agreement to hold off on any invasive procedures which whilst they clearly have significant benefits, also carry an element of risk. In your position I would be asking them to be very specific about why an operation is needed now.
have you had a recent scan that shows thinning of the optic nerve? What about your fields? Have they declined? Honestly, unless there is something showing your vision is actively deteriorating I would wait. I had a trab last year and your eye isn’t the same afterwards. Amazing surgery if you are losing your sight but my consultant is recommending to wait in my other eye. A small amount of nerve thinning g is starting but it’s not statistically significant. I would ask why now? Why does he think single figure pressures are best? My post trab pressures are generally around 11/12 and my consultant is happy with that. Only you can decide but it does sound like you need more explanation from your consultant. Good luck
I don't know if this is helpful but I've had ocular hypertension for 15 years and until a month ago was plodding on minding my own on tafluprost and brinzolamide with pressure stabilised at 15 in each eye. Then suddenly the NHS can no longer source brinzolamide. I went to see my Optometrist who has referred me for laser trabeculoplasty which is apparently the recommended procedure rather than drops nowadays. Except in the West Midlands of England the waiting time to be 'allowed' to even apply for an appointment is 8 weeks, a further 25 weeks to see the consultant and then 24 weeks for treatment - yes, a year and three months to get it sorted and all because the UK Government won't pay the increased price on the world market of the medication I need! However, what I have discovered in my research is that brinzolamide is readily available if you pee on lamp posts and growl at your medical practitioner, so my dog's Vet is going to order my meds from now on!
My guess would be that your consultant has noticed that your Glaucoma is progressing, and wants to get the trab done before you lose any sight. When they examine your eye they're looking at optic nerve "cupping, and they'll record that on your notes as a number between 0 and 1, with 0 being no cupping and 1 being most severe. You can have quite a bit of cupping with no deterioration in your sight (my left eye is 0.5 - 0.6, and I have no loss of vision). Best thing to do would be to talk to your consultant and get them to explain their reasons for wanting to do the trab. (I've had trabs in both eyes - one after a sudden big deterioration in the vision in that eye, and the other to try and protect my good eye.)
This is very good advice, often people tend to get consumed by only focusing on pressure, but there's a lot more to it than this, if they have seen something and an issue arrises, things can deteriorate very rapidly, so definitely worth asking more questions on why the Trab is advised, and could be worth a second opinion as well, as often there is different advice from different consultants.
Two years ago I was shocked to be told I needed a trabeculectomy in my left eye. I was so shocked I just went along with it. It seems that younger consultants are more inclined to be proactive. Whilst I wasn’t aware of a problem in my left eye I do feel that delay in carrying out a trabeculectomy on my right eye years previously may have caused unnecessary sight loss in that eye so maybe the early trabeculectomy in my left eye was the right solution. I no longer use drops in that eye whereas I use drops 3 times a day in my right eye.
My consultant told me that his predecessor, who retired, did very few trabeculectomies, so I think you may be right that sometimes younger consultants are more proactive.
Hi, I'm happy to describe my own recent experience. I have normal pressure Glaucoma with about 50% loss in my left eye. My right eye started to show some loss and my consultant booked me in for a Trabeculectomy (right eye) as a priority. My pressures are between 12 and 16 like yours and he wanted to get them down to single figures. I was reluctant after reading about the recovery period, side effects and long term prospects of success. I got a second opinion who said they wouldn't have recommended a Trab at this stage and normal pressure Glaucoma progresses more slowly so there would be time to take action later if necessary. I was happy with that decision and have decided not to proceed - I felt that once I'd had the op there was no going back. However, they were clear that now that I'm on two lots of eye drops if things get worse then there's no alternative to the Trab. Their recommendation was partly based on my VF test at my second opinion which had a much better score than the two previous tests (96% instead of 88%) - which just goes to show how variable they can be!
Thank you. Yes VF can be variable I agree. I've had poorer ones and then done better next time. A bit like you I feel once a Trab is done there's no going back and I don't want to be in a position of endlessly getting more medical intervention. I'm thinking to seek a second opinion also, as I am very reluctant to be operated on at this stage when nothing appears to have changed.
Hi, I don't understand first why they wouldn't give you a trab for your left eye first if you already had 50% vision loss? And why would they recommend a possible trab on your right eye partly based on better VF results than the time before??? Sorry to be so pedantic but we all learn from each others' experiences! Thanks.
Hi, both my eyes have been pretty stable since diagnosis - the sight loss came from before. At this stage I think the risk to the LE is greater than any possible benefit. They are obviously keen to preserve sight in the right eye (as am I!) and I had two VF tests showing worse scores in the RE 4 months apart at which point I was recommended to have a Trab. When I went for a second opinion I had another VF test which produced a much better score. That consultant said they wouldn't have chosen Trab at this stage and the improved test partly contributed to that decision.
I feel I should also say that I have spoken to people who have had very good experiences of Trabs with low pressures and no need for eye drops. It's a difficult decision but at this stage I prefer not to risk it.
hi like you my consultant keeps on at me to have this operation but I did not want it so I am not having it. My optician said if my IOP stays the same then that’s fine. You will know what to do & go with what your minds said. The older retired consultants were the best. Best of luck with your decision
Thank you Denniboy. It's good to know it's not just me that feels like this. If I've learned one thing in life it is to go with your gut instinct and mine is saying no to an op at this point. It just doesn't feel necessary.
Thanks for your message. I really think a second opinion is helpful - it was important to me to feel in control of the process and I was reassured that they understood and agreed with my reasons for not going ahead at this stage. If I have it in the future it will be an active decision from me and I think that will make it much more likely to be successful. (There's a great book called The Expectation Effect about this)
Hi. I have a similar problem as yours. I had a trab seven years ago in my LE but unfortunately it failed and to add insult ot injury I sompletely lost the vision in that eye. I saw three consultants in three contents and all have the same advice.DO NOT LET ANYONE TOUCH THE RIGHt EYE.I am not in a position to give a medical opinion or advice but whatever you want to do please think carefully about it.
Thanks so much Alprof. I think I'm pretty much decided to leave things alone for now at least. Like you my right eye is what really matters and no-one is getting near it! As long as that stays good I can cope quite happily with life. There is no suggestion that anything has changed with my left - I lost some vision in it before diagnosis, but it's been stable on drops since 2007. I think I just have a new consultant that seems to prefer surgery to medication. Interestingly I was speaking to a friend last night and her husband is now under this lady having previously been seen by the same (now retired) consultant I used to see. He has a different issue altogether with his eye (ulcers) and has been on a steroid drop a day to manage it for some time. This lady wanted him to come off drops, so he did and he had months of flare ups and problems until he reverted to his one drop a day!
I am not sure why some consultants want to get the IOP down to single figures when it can be within normal range up to 20/21. I have also ex perienced a younger practitioner (not glaucoma specialist) to want to treat and indeed diagnose me with 'newly diagnosed glaucoma' which I did not accept. I went for two separate opinions and both did not conclude glaucoma. One experienced top glaucoma specialist said he found it difficult to convince himself that there was any sign of glaucoma... No damage of optic nerves at all. I have read that 40 percent are overdiagnosed or prematurely diagnosed due to the nature of glaucoma and to prevent any risk that this may develop. I have refused all medication and they had agreed to monitor my pressure. I am taking steps to reduce pressure myself naturally and the IOP is reducing. I would always listen to your instincts and get a second or third opinion.
Yes This happened to me in one Birimigham hospitals. The consultant insisted on performing a trab. A second opinion from specialized glaucoma centre in India advised against it. That was 10 years ago and the eye is stable with very slight deterioration. I do not want to speculate or make some rash accusations but I think some greedy consultants are looking for money . Sorry to say this as I have no evidence but one specialist outside the Uk has told me this
hi BrownieBaker. What a tough decision. I hope you work out what is best for you, get support & it goes well. I’ve just found out my consultant has retired. I feel quite thrown by it as really trusted his judgement, Have been allocated a new consultant but won’t be seen for a long time due to waiting lists. I’m finding that hard. Interested in your post re possible change of approach with younger consultant. All the very best. Beth
Hello BrownieBaker, To Be or Not To Be is always the good question but there is no straight direct answer. All the treatments - various eye drops or various types of operations all depending on the individual case (eye sight, pressure, visual fields etc) and what can be done at that particular circumstances. There are always pros and cons , side effects and complications in each treatment. You should ask and discuss thoroughly with the consultant what is the best solution for you. At the end it is our luck....! With best wishes for your best outcome.
hello I'm new to forum. i have had Trab right eye about 3 months ago normal tension glaucoma never hi pressures 12-16, i wasn't aware of problem with sight before op even though consultant had discussed VF test and central field defect , concern optic nerve and optic disc cupping etc. Post Trab I find bright light difficult and am now aware of central defect. I wasn't expecting sight to change after op. I think that surgery will be advised for other eye . I visited optician last week and he indicated optic disc not as healthy in left eye pressure 11 but damage still happening to nerve and disc. I am on maximum drops It is difficult to know what to do for best but i don't want to wait to see problem that i will be aware of. I wish you all the best
From what I have learn't with managing my own open angle glaucoma your readings seems pretty acceptable to me. I thought that single digit readings were not ideal. The reading for my left eye has dropped to 3 and this is considered dangerous. Perhaps you could get another opinion.
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