Has anyone experienced a trabeculectomy in their only sighted eye? I lost sight in my right eye in 1998 due to a brain haemorrhage. The left eye is a lazy eye but I have 20/20 vision with variafocals. I'm concerned if I take the recommended op I might end up with no sight if there are complications?. I can't see the impact/ progression of my glaucoma yet but told in 5 yrs my sight could be gone completely. Thankyou
Christine
Hi Christine,
I have found that the glaucoma journey is fraught with difficult decisions.
I only have vision in one eye and was offered MIGS surgery for my good eye, even though my sight was unaffected at that point.
Someone on this forum asked me the same question; why was I having an operation when there were no problems with the sight in that eye.
My consultant posed it as a preventative measure; my IOP was climbing and at some point the optic nerves in that eye would be damaged and I would lose vision.
I can say that the surgery was successful, although mine was a microshunt and not a trab, which is a simpler, less invasive procedure.
I found once I had made the decision to go ahead with the procedure I became far less stressed as I was constantly worrying about my IOP. Now I only think about it when I have a hospital appointment.
I would definitely discuss MIGS with your consultant as their is less risk of complication, but I’m sure their are users on this forum who will respond with their trab journeys.
Take care and good luck.
Thanks Toby!I have MIGS on my list of other options to ask at my nxt appt..
I'm just struggling with processing the comments from the consultant..it feels a no win situation..either keep up the drops and the nerves choose to carry on dying regardless or have the op and possibly lose sight altogether if there are complications. The doc warns that there are risks..
Also my IOP has never been higher than 15 in sight eye and hospital letters recd after appts always state that IOP satisfactory?
I'm confused as to how the nerves are dying when the IOP is always confirmed ok but I guess there are other factors causing the nerves to die.
Thank-you for your story-much appreciated.
Look after yourself...especially your eye!
Christine
Hi Christine,
It’s difficult, isn’t it.
I built a relationship with my consultant over time and trust him completely.
There don't appear to be any guarantees but MIGS is a minimally invasive procedure so on the face of it, less risky.
Everyone’s target IOP is different so I agreed an acceptable pressure with my doctor and when the IOP exceeded this figure, we scheduled the procedure.
There is a lot of aftercare but I don’t regret the decision; I fully believe the operation saved my eyesight.
I'm sure they're looking out for me at the hospital and giving the best option. I have always had 3mthly regular checks. I've always been classed as high risk having only one sighted eye. I do feel that not much is said with the actual consultant-more so with the nurses while doing their regular obs.
I don't wish to waste their time with me whittling on about being scared etc...
I need to change my approach and ask away whilst I have the attention of Dr Ressiniotis, my consultant at the hospital.
He's spoken of very highly.
It's good to say how I feel with people who are/have been in the same boat...
I completely understand🙂
If you search my earlier posts you’ll find I talk a lot about advocacy and making the most of the limited time you get with your doctor during a consultation.
Take care and do reach out if you need anything.
Glaucoma UK can put you in touch with a “Buddy” if you feel it would be helpful to speak to someone directly.
Thank-you Toby.I approached glaucoma uk but they didn't have a Buddy with my circumstances . The suggested health unlocked which has so far been a positive outlet for me to offload...
Thanks again!
Christine
Are you being treated in the West Midlands? I had surgery done by a Mr Ressiniotis in Solihull about 5 years ago and thought he was a very good surgeon. I would certainly have a conversation with him about the risks/benefits of a trabeculectomy- I'm sure he will explain things to you. MIGS is not right for everyone as it doesn't always lower the pressure enough to be useful. The trouble with glaucoma is that everyone's situation is different which makes decision making very difficult. Good luck with whatever you decide.
Yes I visit good hope average 3 mthly and although Dr Ressiniotis is my consultant I don't always see him. I worry about the consistency which is why I'm considering booking a private appt with him to be able to have that time to understand everything about the op.Thanku for your input
Christine
I have had a difficult glaucoma journey over the past 5 years involving a lot of surgery. I still have vision in both eyes although it is quite badly damaged and I am no longer allowed to drive. I have exactly the same concerns about consistency of care as you do and therefore made the decision to be treated privately so that I know who I am going to be seen by. I was referred by Mr Ressiniotis to a colleague of his called Mr Masood who operates at BMEC (I now see him privately in Edgbaston). It is expensive (£150 a visit) but I have made the care of my eyes a priority and I am fortunate enough to be able to afford this at the moment. Mr Masood is, I have been told, one of the leading glaucoma surgeons in the country and he specialises in complex glaucoma cases. For what its worth, trabeculectomies often work very well. My sister has recently had one in each eye and the operations have been a great success. Her pressures are now well controlled and she doesn’t need to take any glaucoma drops - result!
What positive, reassuring news for your sister! Does the £150 appt cover the type of clinic apppt your would receive at the hospital appts? Same checks?
I'm sure I could manage that every 3 mths..it would be when an op is needed and whether I could cover that cost- plus aftercare..something I need to seriously look in to.
As you say eyes care is a priority for all of us dealing with glaucoma.
Thanku
Christine
The £150 is just to see the consultant. Surgery and tests are on top of that. You're right it quickly mounts up. To be honest, if you are being seen 3 monthly at the hospital and are being treated as a priority you are probably better off being treated in the nhs. Particularly if you need surgery. I only went private because I felt I wasn't being seen often enough and there didn't seem to be a thought out plan for my treatment in the nhs.
OK. That all makes sense, thankyou.Christine
Appointment about every 7 months with nhs
If you can see ok i would leave well alone ive had more ops on my eyes in cluding a trab and now i have vey little sight
This is my concern. I obviously can't see what the doc can see (at the back? ) of my eye which is why it doesnt make sense saying yes to an op at this stage?
I've just recd my letter from hospital as I do after every appt and yet again it states 'eye pressure satisfactory'..IOP was 15 in sight eye. Also stares slow progression of deterioration in field test..
I have a similar dilemma. I’m 62, still working and have stage 3 glaucoma in both eyes though my vision remains pretty good at the moment and I’m still driving after a border line pass on the dvla vft. However my pressures are unstable and the eye drops are no longer doing their job so my consultant now wants to do a trabeculectomy in both eyes despite ruling out surgery 9 months ago because of the risk of ‘wipeout’ as he called it. At this stage I don’t know what to do, such is this glaucoma rollercoaster that you can’t get off! I’d be interested to know what procedure is MIGS though?
It sounds like we're in the same boat...I'm worried if I leave the op as some suggest, in case I make matters worse or the time comes when it's too late to have the op.
Thanku for listening
Christine
I had a similar dilemma recently. Last September I had sudden glaucoma damage to my right eye and lost a lot of the sight in it. I had a trab in that eye to try and save the remaining sight. I still have some sight, but the central vision is very foggy - I can just read the top two lines on an eye test - I've no chance of reading anything normally with it or watching TV with it. My left eye also has glaucoma, and the vision is 20:20 with glasses. Given how suddenly the Glaucoma progressed in my right eye, my consultant also suggested a trab in my left eye. I went ahead with it in February. There was a hiccup where the pressure hit 56mmHg a couple of weeks after the op, and I ultimately needed a needling procedure, but luckily that was caught really quickly and I didn't suffer any damage. My left eye is still 20:20, and the pressure is now around 15mmHg and seems pretty stable. It was a scary decision to have to make, but ultimately I think I made the right decision. Of course, there are risks involved, but I made the decision thinking if I didn't have it done there was a good chance I'd lose the sight in my left eye too, and I thought there was a greater chance of that happening than me losing sight due to the surgery.
This is my dilema-do I leave the op and enjoy my 20/20 vision in the troubled only sighted left eye and hopefully they kept up my 3mthly chks...or risk the op and the risks it carries..I know I wudnt cope if my sight went...I have panic attacks when I think about it.Thanku for your input.
Christine
It's certainly a tough decision to make. For me it was maybe a bit easier because my right eye deteriorated so suddenly I couldn't take the risk of that happening with my left eye. I actually lost most of my vision in my right eye between check ups in June and September, although I think the emergency cyclodiode laser surgery I had did make it significantly worse. I think the best thing you can do is have a good chat to your consultant - get them to quantify the risks. I think the risks of losing your sight having a trab is quite low, so if your risk of losing your sight in 5 years is high, I imagine your consultant would encourage you to have the surgery. Hope everything turns out good for you!
Thanku for listening and offering sound advice
You got me thinking, so I googled this:
There's no evidence yet indicating that losing excess weight reduces the risk for glaucoma, although significant decreases in IOP have been reported in humans through weight loss. Caloric intake is another factor for glaucoma patients.
I think the reality is, it probably isn’t going to change anything very much, other than your IOC, but that might slow your deterioration.
If it were my sister I think I’d be saying “thank you for your input, but I alone have to take responsibility for my own health and obviously explore all helpful options with my consultant”. Maybe you also have to remind her that those of us with the condition have enough to contend with, without having extra advice from non professionals! But yes, have a moan, because you need to let your frustrations out!
The visual field in my left eye was down to about 30% and dropping fast. The ophthalmologist said he could measure the trajectory of the vision loss, and stated with certainty that it would be gone within a very short time--months, maybe a year. He did a trabeculotomy-shunt surgery and the eye has remained stable for 2 years so far. The right eye was on it's way out, too, though not quite as far along. I had the surgery in that eye a year ago, without any further vision loss. It was a very difficult decision for me both times, because I didn't have a full vision in either eye, but the alternative was to not do it and gradually and agonizingly continue to lose my sight altogether. I now have hope. Make sure yours is a top-notch surgeon, as mine was. Best of luck and be grateful for every bit of vision you have.
I feel so happy for your outcome and its very reassuring. Until things go wrong none of us appreciate what we have.
New Diagnosis: Right Eye Normal Pressure Glaucoma.
Anyone else diagnosed young?
Glaucoma and light tolerance 
Update on hospital visit
