primary closed angle glaucoma

[Ohana-2020]

hello, diagnosed in January, with Primary closed Angle glaucoma, unfortunately started with symptoms in lockdown so appointment at opticians delayed well before referral . I have had bilateral laser iridotomies March and 10 days ago cataract extraction right eye and Omni surgical system performed but no information about this prior to surgery, thought I was having an Istent, and when I asked at post op check about stent consultant just gave me the patient information leaflet. No explanation! So two days post op I was trying to research on line with very high levels of anxiety. I am 74, active and alert and worked in NHS for over 40 years, must be so frightening for anyone who had no medical knowledge. Can anyone reassure me about this procedure , some literature says not suitable for closed angle ! I’m presuming the cataract surgery opened the angle up! Communication and Patient information is vital to enable us to make informed decisions. Very anxious about the future as seem to be researching g everything myself,

[Ritualhazard]

Hi there. I also had acute closed angle glaucoma last year followed by bilateral iridotomies. My angles are now wide open but I have open angle glaucoma now! My consultant said cataract surgery wasn’t suitable for me as my angles are open - that’s usually performed if the iridotomy doesn’t work. IMs okey I can’t help with your Omni procedure, I seem to be going down a different path but it does sound like you have been treated in a shocking manner. I would even suggest negligent. Did you agree to the procedure in advance? It doesn’t sound like it. I would contact PALS in the first instance to request a full explanation of what happened, why you had the procedure and full pros and cons. Good luck

[Ohana-2020 in reply to Ritualhazard]

Thanks,I’m taking everything slowly as don’t want to be labelled a difficult patient! I was told verbally and have a copy of letter to my gp confirming cataract surgery and Istent tube insertion. No explanation from consultant what Istent was, Only given a patient information leaflet to read and ofcourse I researched throughly on line. I didn’t discover I had had a different procedure till my post op check , when I asked how long the stent stayed in. Then told I hadn’t had a stent and just given another patient information leaflet about Omni surgical system. This leaflet has a page headed. Is The OMNI SURGICAL SYSTEM right for you? Talk to your doctor about your options. That is all I wanted explanations to make an informed decision. It’s all been so stressful, hopefully what ever it is has worked! I sent an email to hosp at there request, not easy on second day post op! Replied with appointment in a month and they will ensure a nurse is in attendance at the appointment to explain . I have a good medical background, just difficulty understanding the consultants accent. 🤞🤞it is resolved, but confidence damaged. Must say the optometrists have been superb, very informative and professional. Might have to consider changing consultant ophthalmologist as really can’t afford to pay privately for long term care.

[Toby_from_London in reply to Ohana-2020]

Hi Ohana,

Welcome to the forum! You are amongst friends here.

I don’t currently have cataracts so can’t offer any advice in that respect unfortunately but have had similar MIGS surgery with a microshunt implant around 3 months ago. This creates a drainage pathway to increase the flow of fluid and reduce IOP.

I too was offered a leaflet although the printer at the hospital wasn’t working that day, so I didn’t even get that!

Although I have built a relationship with my surgeon over time and trust him completely I agree that consultations seem very rushed and there is a lot of information to take in when you are already in a panic about being diagnosed with glaucoma.

Before my surgery I tried to gather as much information as I could (if using the internet stick to reputable sites) and was put in touch with a Glaucoma UK “Buddy” who had been through the same procedure, which was a great help.

I now have a list of questions that I ask during consultations, and also take notes so I can research further if necessary.

Although I am still in recovery my IOP is much lower than it was before the op; it was 42 then 5 the day after surgery! Make sure you attend all appointments and keep to the eye drop regime you have been given (I know it’s very difficult, especially in the first few weeks) to maximise you chances of a successful outcome.

Hope that helps; take care🙂

[Ohana-2020 in reply to Toby_from_London]

Oh thanks do much for that positive reply, I do everything to the book, so hopefully a good outcome! Heather

[Ritualhazard in reply to Ohana-2020]

You know how the NHS works more than me but personally I wouldn’t mind being labelled a difficult patient. People are more likely to do their homework and listen to you (I think!). Unfortunately I think it’s the situation at the moment. Each consultant wants to do their best for their patients but are finding it difficult with the pressure they’re under

[Ohana-2020 in reply to Ritualhazard]

Yes difficult times for NHS But patients must come first I think. Thsnks for replying Heather

[HMThai in reply to Ritualhazard]

Good morning from Thailand, you wrote:My angles are now wide open but I have open angle glaucoma now! My consultant said cataract surgery wasn’t suitable for me as my angles are open - that’s usually performed if the iridotomy doesn’t work!

I have Angle Closure Glaucoma.... just had an detailed Eye evaluation including Biometry,my GS also said cataract surgery would not be suitable (even though she said it may reduce IOP by 4mmg) .....as my Angles are open (Laser Iridotomy patent(working well).... IOP was hoping around at 22/24....in left Eye....22 in right eye.I was upset cause I had hoped she might suggest Cataract surgery as I want to give up these eyes drops

......I was using Duo Trav...so we are adding Alphagan P O.1% ....was told to use in left Eye but am putting in both eyes as I used to 3 years ago...we flushed them out and so far Duo Trav alone were ok....I have a support Opthamologist here in my city.... will do another IOP reading soon.... sorry for intervening here.... this was the most suitable place for to have a chat as it is related to my case..... communication is so so important even though my GS feels my stress....😂😂.....we know each well....I am cool as a cucumber when I am not in front of the Goldman Tonometer.... anyone else have the same feelings?.... Hope all goes well for you... Now I understand fully why cataract surgery is not suitable!👍👍❤️.... This is a terrific place to be....I have lived for over 25 years in good ol'London town and really feel all of us here just consoling and being warm towards each other..... sending warmth to all in UK..... anyone anytime wishing to come to visit us in Thailand... you are very welcome.....we are connected and can arrange everything for you....my wife has a little cake /coffee shop 🍰 🎂 here at the seaside... plenty of affordable accomodation... Sending love 💕 to all !❤️

[Seanickone]

I've been attending the local hospital for several years. I have never been seen by the same person twice and the notes that have been taken have been very poor eg. biro scribble in a margin that can't be read. There is a culture of paternalism and not keeping patients involved in what is happening - though this is not across the board. My advice is to find a local optician who is a specialist in glaucoma and to ask them questions at eye check ups. This is what I'm doing and my local optician also provides his service to the local hospital though I've never come across him. I've avoided all chain opticians as they have given me a very poor service in the past. For an acute problem, the nurse practitioners are usually a better sources of information at the hospital.

[Ohana-2020 in reply to Seanickone]

Thanks so much that is exactly what I have done. On disgnosis seen by an excellent optometrist at the hospital, who explained every thing and even organised oriditomies, I was so anxious about Acute Angle closure. He is a glaucoma specialist optometrist and fortunately is the resident optometrist at my local opticians. Got an appointment and a long list of questions! 🤣

[MaryCarnegie in reply to Seanickone]

I wouldn’t choose a chain optician. Have gone to same small family firm nearby since my younger son first needed glasses nearly 30 years ago. I used to be in there every other week when one of my boys broke their glasses. Younger one got so short-sighted he could only read top line of Snellen chart on a good day. We joked he slept with glasses on in order to see his dreams. The couple who ran the optician’s have now retired and their son has taken over. A big chain opened across the road from them not that long ago before Covid-19 but has now closed. It was flashier and had bigger premises. Loyalty must have had an effect so good service and reputation pay off.

[Ohana-2020 in reply to MaryCarnegie]

Thanks. Quite agree.

[Efabear]

Hello. I was diagnosed in Nov. Like you diagnosis was delayed because of COVID so lost a fair bit of sight. I had iridotomies as an emergency which was only partly successful. I was meant to have GSL plus cataract surgery in july on worst eye but just needed cataract surgery apparently. Will know if its been enough to bring pressure down in eye with advanced disease and then need a decision on other eye later this month. I too have nhs experience as a retired mental health nurse. Information has been lacking and like you I'm glad to have medical knowledge so I can try to work stuff out for myself. Sorry dont know about omni surgery but glaucoma UK have lots of useful webinars and you may find info there. This forum is a lso great for support as it can be a roller coaster at times. Sending positive vibes

[Ohana-2020 in reply to Efabear]

Thanks so much. Hopefully we have good results.

[Trish_GlaucomaUK Partner]

Hello Ohana.

The Omni Surgical System omits the need for a stent. It could be that your consultant felt that a stent was not the best option for you and the Omni would be more successful.

I am surprised you were not told prior to the procedure being done, as the theatre would have been set up for the Omni to be done.

Sometimes, information is missed, especially if the consultant has a strong accent, which you mentioned in a reply. I'm not saying this is the case, but it is a possibility.

The Omni targets 3 points of resistance to reduce the eye pressure, whereas the stent would only target one.

[Ohana-2020 in reply to Trish_GlaucomaUK]

Thank you Trish. That is the most comprehensive and reassuring information I have been given. If only someone had told me before the operation , or indeed immediately after the surgery when I thanked all the team. It had been an anxious time as a rep was in theatre guiding the consultant through the procedure. It was only 48 hours after my surgery at post op check when I asked about the Istent , which I believed had been inserted. I was very confused and anxious to be told no stent had been fitted. I was then given a pre operative patient information leaflet which clearly states

“Is the OMNI Surgical system right for you?Talk to your doctor about your option. Please talk to your doctor for complete risk information , and to discuss whether treatment with the Omni surgical system is right for you. I know I have not received any verbal information , this leaflet was handed over at post op check. I then had to read and research and contact the hospital where a charge nurse explained the procedure over the phone. I was then asked to submit an email with my concerns to the management team. Not advisable to spend a lengthy period of time on my iPad so early post operatively. hopefully this will be avoided at future consultations as I will have a member of staff accompanying me. I will ask to see the consent form I signed, which should match with the pre op letter my GP received from the consultant , stating she would carry out cataract extraction with GSL and an Istent “being the go-to procedure “. I researched The Istent myself as again only given patient information leaflet!

However your explanation makes

Me feel more confident. Communication is probably the most vital part of care, especially for a newly diagnosed patient, still trying to come to terms with my closed angle glaucoma.

Thank you again. Ohana.