Quick question for trabeculectomy people!

[stephanie1977]

How often do you check eye pressure in the months/years after a trabeculectomy? I'm confused at how often it should be checked to make sure it is stays near the target pressure. Thanks!

[Cornwalleyes]

Hi I had a trab in August this year, I’m now on three monthly check ups. I think the consultant said after the next one in March we could go to six months between them. However, he also needs to monitor my other eye to check it’s not getting any worse as well as the trab. So it might be a longer period in between if there are no other problems.

[Carbootshirl]

Hi, I'm new to the forum and Glaucoma but in answer to your question, I have mine done every year at the opticians which is free when you have glaucoma, and once a year at the local hospital to check everything. Hope this helps.

[Peg99]

Hello Stephanie1977

I'm not sure there is a definite answer to your question about how often IOPs should be checked after Trabs or anything else. As with so many things, it depends on your particular circumstances and to a large extent on the availability of your specialist.

Personally, I have had my IOPs checked every month post Trabs (which was many years ago) because I have normal tension glaucoma and for me, it was decided that my pressures should not go above 12, ever.

However, the NHS was not able to do the tests for me so I relied on local Opticians to do pressure tests which they have always been willing to do, some for free (because it only takes 5 mins between patients), and others for a nominal amount, £5 - £8. I was lucky, I could afford this but I appreciate that for some it would not be possible. Perhaps every 2 or 3 months would be an affordable compromise in those circumstances. (Just to complete my story, in the end, and when the instrumentation became available, I bought my own Icare tonometer so I could check my pressures at home.)

The bottom line is, if you are worried, do what you can to alleviate your worry and take control of your situation. The specialists give good advice and it should be followed but, sometimes we have to take our own steps to be able to live peaceably with our glaucoma.

Happy and healthy 2023 to you.

Best wishes, Peg

[PBX142 in reply to Peg99]

Hello Peg, I was interested in your reply. Like you I have NTG. Can you tell me what your pressures were originally? Also, I thought that the instruments the opticians use aren't as accurate as the Icare tonometer, which puts me off going to Specsavers etc in between Moorfields appts. Am I wrong in thinking this? Sorry about all the questions, but just one more: where did you buy your Icare tonometer, and was it astronomically expensive? Many thanks. And I do so agree with every word of your last para! Happy and healthy New Year to you too and anyone else reading this!

[Peg99 in reply to PBX142]

Hello PBX142

My pressures were normal at 17 and 18 but I had 'cupped discs' (as the Consultant always said when looking in my eyes) and severely damaged fields. NTG wasn't even mentioned for 12 months or so, I just had drops given to me and of course the pressures stayed within the normal range, around 17/18. It was a change of consultant and a private second opinion to Professor Hitchings in London that gave the diagnosis of NTG and established the target highest pressure of 12, and ideally below 10. It was also the Prof who recommended fortnightly and then monthly monitoring of my pressures which of course I have done.

As to the tonometer machines available at opticians, you are right, a lot of them, especially the chains such as Specsavers, use the air puffer machines to test the pressures. They are not as accurate as the Icare tonometers or the Goldman machines used at the hospitals. I found that 'Family' run/Independent opticians usually have Goldman machines too and it is those establishments which I visited for my pressure checks. I never have the air puffer machines because of their lack of accuracy.

The Icare tonometer is definitely as accurate the Goldman. I check it periodically with my local optician by him using his usual Goldman machine and my Icare tonometer. Other than the fact that he can do half point measurements on his Goldman, the 2 machines give the same readings so I am happy with the Icare's accuracy.

I bought my Icare about 13 years ago and yes it is astronomically expensive. I paid about £2000 and it is the model that someone else has to take your pressures for you (my Hubby, in my case). The reassurance it has been able to provide has been invaluable not to mention the convenience of having it at home, or anywhere else with us; and during the lockdowns too it came into it's own. I know of only one supplier of the the Icare range in GB and that is Mainline Instruments, based in King's Norton, Birmingham. They do a version of the machine which you can operate yourself now, but again, it is very expensive.

As I said in my original reply, I am lucky we could afford the Icare, and in view of the importance of monitoring my pressures to keep my remaining eye sight, we thought the outlay was worth it. Many are not as fortunate and I can only suggest that the local Independent Optician is the best bet for help with accurate pressure monitoring between Hospital appointments.

[PBX142 in reply to Peg99]

Hi Peg, I replied in full to you but think I didn't press Reply so just to be sure, am rewriting, so hope you don't get two responses from me. Thank you so much for your full reply which I find so helpful and makes a persuasive argument for monitoring pressures oneself. What a good idea to go to a local independent optician and strike up a regular 'deal'!I am toying with buying a tonometer though. I do find pressure taking at Moorfields nervewracking and maybe doing it myself might help take the angst away as well as providing useful info. I see from a further post that you talk about taking Diamox so in effect you have control over your actual pressures too, which is fascinating and pretty great. But is this something you take long term? I took it for a while pre-trab and it gave me such pins and needles! Maybe self-medicating with Diamox is the only way to adjust pressures at home, between visits to your ophtho. Also to say that I looked up Professor Hitchings and what a CV! Too bad he seems to have retired, but sounds like his work has had quite an impact. Thanks again, Peg, and best wishes to you, Pattie

[Peg99 in reply to PBX142]

Hi PBX142

You'll be pleased to know that you didn't reply to me twice.

Re my taking Diamox, I take it on the instruction of my Consultant. It was first prescribed post Trabs when I was 29 and I have been taking it (250mg modified release, twice a day ever since, double when my pressures get too high) - 37 years. Yes, a very long time. The pins and needles are there all the time, worse in the mornings and worse still in the cooler weather. It's bit like living with boxing gloves on much of the time but over the years I have adapted and got used to finding different ways of doing things. Buttons and fasteners are a no-no and the kitchen is a huge challenge but when things are not possible for me, my husband obliges. In fact, he has come to my rescue on many an occasion.

I was interested to see you had looked up Prof Hitchings. He really was ever so good and I used to see him every year until he retired. It was him who recommended to permanent use of diamox and suggested that I take responsibility for monitoring my eye pressures. So I have a lot to be thankful to him for as I am convinced it was his 'management plan' that has kept my sight longer than even he thought I would.

Re you getting your own tonometer, I wouldn't be without mine as the peace of mind it provides is priceless and the control it gives me over my glaucoma is very reassuring. My Consultants have all been happy with me having a home tonometer and take the readings seriously when I discuss them with them. It is many years since I have been to a hospital eye clinic but I do remember them as being quite chaotic and very busy; not at all conducive to taking eye pressures, so I can understand that you find the experience at Moorfields nerve racking. Given that, it sounds like a home tonometer would certainly help you.

Take Care, Pattie.......Peg

[PBX142 in reply to Peg99]

Thanks once again Peg for your full and helpful reply! I was given to believe that Diamox was just to be used short term, but interesting to say the least that you have used that, and a tonometer, to maintain your eye pressures! I did look up cost of tonometers and the self-use one racks up at nearly £4,000...so a bit prohibitive for me. But I am now going to get friendly with a good local opticians - definitely NOT Specsavers! - to have regular pressure checks and will mention this tomorrow to my ophtho at my Moorfields appt with the question, 'What happens if my pressures appreciably rise between appointments?' I have faith in her but not in the NHS and what the specialists are now told in terms of how often they can see patients. On the other hand, if it was up to me, I'd insist on weekly checks!!! Good luck to you Peg and thanks again.

[Peg99 in reply to PBX142]

Hi PBX142

You're welcome and good luck at your appointment.

Peg

[PBX142 in reply to Peg99]

Just seen your kind comment Peg, and thank you. My pressures are disappointingly high, both 15, after needling procedure to lower pressure three years after trab, so am back on Tiopex for the trab eye and back for more needling in two months. Talk about a journey....!

[Peg99 in reply to PBX142]

Hi PBX142

Sorry to hear that your pressures are a bit high and that you are back on Tiopex. I really do feel for you.

If it's any help to you, after my trabs back in the 1980s I was put back on drops within a few weeks. In fact , within a year I was on 4 different drops and the diamox, and that is more or less where I have stayed for 30+ years.

Drops are a nuisance as are repeated procedures but, at the end of the day, for what they do in terms of saving sight, they are a nuisance well worth putting up with. As for the drops, after a bit of time, they just become a tiny part of your routine to such an extent that I find I can put them in wherever I am, without the aid of a mirror.

Take Care Pattie...Peg

[PBX142 in reply to Peg99]

Thanks Peg, I have not had any drops in that eye for three years since the trab, so it has done its work for that long. The consultant wants to re-needle because there is still a bit of scarring on the bleb - I know that needling doesn't always get rid of it all at the first go - so fingers crossed that the re-needling will do it and I will then be off the Tiopex. But for the next couple of months, Tiopex is what she calls belt and braces. She also talked about the possibility of revising the trab further down the line. I guess different consultants have different methods. I switched last August to Miss Kamal at Moorfields because she specialises in Normal Tension Glaucoma, and the previous specialist was all set for me to have SLT to improve the pressures. But Miss Kamal says that wouldn't work for me at this stage....and on we go! You take care too, Peg, and thank you for your support.

[stephanie1977]

Hi Guys thanks for the answers. After my trabeculectomy last June I've had the pressure checked weekly, bi monthly and last visit was December 10 and then I'm to be seen again in June. I think I am going to take your advice and try to get it checked at least monthly. I'm just not comfortable going a long stretch without knowing all is ok. Same for the other eye which is on drops and I am always worried they will one day stop working like they did in the eye with the trabeculectomy. Peg are you happy with the ICare tonometer? I'm thinking it may be a good investment. I have " intermediate tension" glaucoma ..more on the normal tension side and my target pressure is 14.

[Peg99 in reply to stephanie1977]

Hello Stephanie 1977

Yes I am happy with the Icare tonometer and it has helped me greatly in monitoring my eye pressures. They are very expensive though. (See my reply to PBX142 above.) Since I got mine, they have introduced a tonometer that you can use yourself; that would be much better than mine which needs my husband to take the readings.

Having a target eye pressure at least lets you know what to aim for but without the frequent pressure readings I would be lost.

In my case, I have instructions to increase the dosage of my diamox tablets from every 12 hours to every 6 hours if my pressures get too close to my upper limit. I then keep monitoring my pressures and when they return to acceptable levels, usually 7 or 8, I return to my usual dose of diamox. I simply wouldn't have been able to do this over the years without an Icare tonometer, so I am very happy with it as I believe this close monitoring has helped me keep the remaining 5% of vision.

Before I had the Icare I used to go to local Independent Opticians (I have moved around the country a bit since first diagnosis). I always found at least one who would take my pressures fortnightly/monthly or more often when needed, using their Goldman machine. This system worked too and I always found them very helpful and interested in the management of my glaucoma and I can recommend anyone who is concerned to set up a similar arrangement with their local optician.

Good luck to you, keep taking the drops and take care.

[Hidden]

I had a stent (was going to be a trab) in early September. Have had post op checks on a regular basis over the three months since the op. Now I've got a gap of 2 months and they'll do field of vision and photos of the back of the eye as well as a pressure check. I'm assuming if all is still okay I'll be back to 6 monthly checks. My clinic is good at calling me back if they're not happy with the pressures. Hope your pressure stays down.

[eyesong in reply to Hidden]

Ruth, what kind of stint did you have , what was your pressure before and after surgery? Did the stint ever get stopped up and have to be opened up? I had AHMED stint on Dec 14 and it worked for 2 weeks, pressure came down from 37 to 10 and now back to 30 again. Thanks

[Bellamolly60]

I certainly would have a check at least every 12 months

Take 🇺🇦👍

[Derfahrer]

I have an Icare tonometer at home, so I check mine daily. I also would not be comfortable going 6 months or longer. I had a trab in one eye just shy of 2 years ago now. After year 1, quite suddenly, the IOP in the trab eye started to creep up. Whereas before my range was 10-14 I started seeing 18's in late afternoon. The bleb still looked fine, so the docter added a single drop of Betaxalol, once per day, which I was able to confirm was sufficient. I personally wouldn't go longer than 3 months, and ideally would check monthly. Well, ideal is to be able to check it at home.

[PBX142 in reply to Derfahrer]

Hi Derfahrer, I am in a similar position in that post-trab, my pressure is creeping up. I will research Betaxalol...I'm not clear from what you've written whether that brought your pressure down to 10-14. And can I also ask where you bought your Icare tonometer from? Many thanks!

[Derfahrer in reply to PBX142]

Hi,

I got my tonometer about 3 months after the trab surgery. In the doctor's office my IOP was measured in the 10-13 range. Once I got the tonometer, I could see that 10-13 was also the range at home throughout the day. Except for waking which would be a bit higher, sometimes up to 16-17 but it drops really fast after getting out of bed.

Then I saw it go up, and the doctor confirmed at the office. I experimented then with the Betaxolol (brand name Betoptic I believe. It is a beta blocker like Timolol but doesn't seem to have as strong of a systemic side effect). After starting the Betaxolol, my range is generally more like 10-13 again, a few 14s here and there, and 15-17 upon waking.

I am in the US and got my Icare from a distributor here. So it really depends on where you are. You can look on the Icare international site and find distributors.

[eyesong in reply to Derfahrer]

Hi, I am in Texas and Icare will only sell through your Dr. here , the ICARE Home 2 is about $3000.00 retail, but I am considering it. I had AHMED stint in one eye Dec 14, 2022 and pressure was 10 then 22 and now 30 after 3 weeks. If I had known at first sign maybe the blockage could have been opened. You are the first person from US on this site I have seen, and I love this site so much and respect all the good input. I see new medications that my Dr. has never tried on me etc. The best patient is one who is self informed and pro-active and asks questions. Thanks, eyesong in TX

[Derfahrer in reply to eyesong]

Hi, there are several online distributors also (MyEyes, DigitalGlaucoma). But you will need to get a "prescription" (could just be a letter approving it) from your doctor. And if you have an HSA you can use HSA funds. Also in some states such a prescription means you can avoid sales tax.

Agree, situations like this are great examples of the benefits. I caught my increase pretty quickly. Could have been months before I saw the doctor again.

[PBX142 in reply to Derfahrer]

Hi Derfahrer, thank you for your reply! Your response and that of Peg99 is convincing me of the importance of regular monitoring myself rather than rely on the less regular visits to the eye hospital! I'm going on Wednesday for my next appt and will talk to my ophtho then about this. As it's Moorfields, the eye hospital, the might have a lead to tonometer purchasing. Thanks again!

[stephanie1977]

Goodness so glad I started this discussion lots of info from kind people! I'm going to focus on getting more pressure readings and possible purchase an I Care. I am currently living in Germany and before my trabeculectomy in Mainz at the Uni glaucoma center I stayed at the hospital for a 48 hour pressure reading. This was very helpful to help determine what my pressures were and prompted my specialist to recommend a trabeculectomy as drops we're not enough. I really think the glaucoma field needs to really push for home monitoring!