I have pigmentary glaucoma and developed a central defect in my left eye, right eye is fine but also being treated with drops.
Due to the type of glaucoma I have, which can cause very high spikes, I bought a Tonometer for just over £2k, the wife wasn’t happy at the time I must admit, but it has been invaluable to me. I have noticed all kinds of things I can do that help keep my pressure low, like staying more active, exercise has a big positive impact.
It has also shown I am having regular pressure spikes when asleep which would have otherwise been missed. The consultant was happy to use the data I’ve collected and has stepped up my treatment, he’s added another drop and is now recommending a deep sclerectomy, which I’ll have in about 3 months.
I think without the tonometer I would have continued to be monitored, and likely lost further vision. If anyone is on the fence and thinking about buying a tonometer I would highly recommend. I know of other people on this forum that have similar stories to me, where the tonometer data has been a driving force to treatment, and ultimately puts you in a very strong position.
Has anyone had a deep sclerectomy? I would love to hear some peoples experience.
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Jon1988
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I don't have pigmentary glaucoma, but I just wanted to say thanks for sharing this story. What a relief that must be for you especially since you've got such a responsive consultant also. That was definitely money well spent !
Interesting also about the beneficial impact of physical activity on eye pressure.
Yeah Icare home2, it's really easy to use. I honestly don't understand why Glaucoma isnt treated like high blood pressure or diabetes in terms of home management.
Thank you for the information about your home tonometer. Very useful to know.
I have had bilateral Preserflow micro shunts implanted ,in 2020 and 2021 with local anaesthetic . Very little discomfort throughout and excellent care.
They seem to have worked quite well, but the pressures are occasionally raised a little, although the vision is fairly stable without any glaucoma medication, just dry eye drops. When I asked about any possible further measures I was told that a Trab may be possible for me if needed in the future.
Hi. I had a deep sclerectomy in 2017. I think the surgical procedure and recovery process are similar to having a trab. It all went smoothly for me at the time, but unfortunately only worked for 2 years due to excessive scarring, and after a failed needling attempt I had to have a tube implant in 2019.
Thanks for replying. Can you still have a Trab after the Tube, what further options do you have if the Tube fails? Sorry to be negative, I'm sure the Tube will last, I just want to know what the future pathway might be for myself.
I am not sure if you could have a trab after a tube. In my case it wouldn't be an option as the trab would almost certainly fail fairly quickly for the same reason that the sclerectomy did. My tube took over a year to slowly reduce the pressure down to somewhere near what we were hoping for (low teens), but since then it has crept back up to around 17. I am having field tests every 4 months & because my sight loss has slowed significantly since the tube, no further procedures are needed at the moment. At one point there was some discussion about putting in a second tube if needed, but it was decided that would be too risky in my case (I have very high myopia which can mean a greater risk of complications). So if I need anything else doing, it will probably be a type of destructive laser process. I have forgotten the exact name - it is something they used to do for end stage cases, but in recent years have refined to be suitable in other situations too.
Don't worry about thinking of the negatives, I also want to know what my possible future progression might be, and what options are available. Please remember though, trabs and tubes are usually successful for many years in the majority of people - they wouldn't do them otherwise!
Found your post really interesting. Did you take your own readings or did you have help? Did you have to wake yourself up to take the pressures in the night? Were you advised how frequently to test to get a good picture? Did your consultant recommend taking your own IOP readings or is this something you initiated yourself?
I agree with your later post too. I feel Glaucoma treatment currently is way too passive and reactive. But unlike Diabetes you don’t die from Glaucoma. Your quality of life is severely impacted but you likely won’t die from it. That’s why it feels like research is chronically underfunded and progress slow on understanding what causes glaucoma. High IOP is one indicator but we don’t appear to know the cause and in normal tension glaucoma the IOPs aren’t actually even an indicator, so that in itself should say something. Basically we don’t know what causes glaucoma. Nothing will change till research cracks that old chestnut.
I take my own readings and it’s all managed in the app, so you can see the mean over a particular time period, and trends etc. What is really powerful is that it will also give you a breakdown of times of day, and after a while of us you really get an idea to what causes IOP to fluctuate or spike.
I have it in my left eye and trying to do everything possible to prevent or slow it impacting my right eye, I’m 34 so have a long way to go.
I must admit, I am seeing a private consultant, he told me to hold off on buying one because of the price, but because of the type of glaucoma I have, it can cause pressure spikes after exercise and I felt not having the information was impacting my life and causing anxiety, I kept popping into the opticians to get readings and they were getting sick of me!
I had my first check up on Tuesday after having the tonometer and the consultant was happy, he said he has been considering buying one to rent out, so I have probably pushed him a bit closer which is a positive. Once he seen my pressure was spiking he immediately increased my treatment, he added another drop and discussed some surgery options. The problem I have is I have developed a central defect very close to fixation, which puts that eye straight into the severe category, so I need to be more aggressive early on. I have thought about it since the discussion, and think I’ll ask to have a go at SLT before a big surgery, and I can closely monitor IOP so I’ll know if it’s worked or not and can be more reactive. I feel like once I have major surgery, I’m putting a time limit on losing the eye so want to try and hold off as is sensible. He said the tonometer had put me in a strong position and was overall very encouraging to me being involved in managing my conduction.
I’m in the process of moving across to him under the NHS, and he said to continue bringing my readings in, so I think it just about getting a good consultant. I am an advocate for private though, the difference in care I received has been substantial, the NHS actually misdiagnosed me. I’ve spent around £400 on three appointments which all lasted about an hour long so has been well worth it for me.
I have come across a small community of people that have tonometers and do some infrequent research, and apparently it is common for IOP to rise 5-10 points when asleep. Since I’ve noticed the rise I’ve been able to reduce the spike from 25 to around 20 by changing my sleeping pillow, essentially the flatter I am the worse the spike, so I’ve got a wedge pillow and even add a few more pillows to that.
I naturally wake up about 3-4 times a night, so I have the tonometer next to my bed and quickly take a reading and go back to sleep, it really is that easy.
I took the Tonometer with me to see the consultant and did a measurement, it was exactly the same reading as the tool he uses, the one with the bluelight and is apparently gold standard.
It just gets more and more interesting! I also have a central defect, nudging fixation point, in one eye but I do also have glaucoma in both eyes just my left eye I’m not aware of any vision loss at the moment. The right eye is very obvious to me.
It’s actually my retinal bleeds that seem to concern my consultant the most, rather than my IOPs so he may not be so interested in the tonometer. 😕 My SLT has been booked following bleeds even though my pressures were controlled.
Tonometers to rent out though sounds fantastic. The NHS could do that too!
Have you been offered a 10-2 field test rather than a 24-2? It checks the central points in more detail rather than defaulting to the peripheral like the 24-2. I’m considering asking for one. I think my central loss is more extensive than shows on the 24-2 or that the OCT can pick up.
Thanks for sharing! All useful information to take back for discussion with my consultant, me thinks!
Do you still have peripheral vision in the eye with the central defect? I have read that you can have defects close to central first with normal tension, but I have pigmentary, which is causing open angle, and you also have open angle. Did you have the central defect when you were first diagnosed?
Its funny because it was only after they pointed it out that I noticed it, but it is actually extremely noticeable when I close my good eye, cant believe I never noticed.
I'm having the 10-2 in 8 weeks, we spoke about it on Tuesday and he wants to see how close it is to fixation.
I do think the NHS will rent them out, but there is a long wait!
Yes I still have peripheral vision in the eye with the central defect and yes I had it at diagnosis 4 yrs ago. In fact it’s why I was referred as my fields were borderline, and at that point so were my pressures, so nothing to suggest a problem. Just I had a tiny (at that point) hole in my vision.
The “hole” has got bigger year on year since 2016/17 when I first noticed it.As you say I’m told by my doctors that many people may not have noticed the hole in their vision. My doctors are therefore amazed I can draw a picture showing exactly where my vision loss is and that matches the field test cross for cross. I’m amazed they think I wouldn’t see what is to me a whacking great hole in my vision! We have agreed to differ on this! 😂 I’m still keen to get a 10-2 though. I think it might be very revealing.
Glad to hear you’ve seen positive response in your pressures to both exercise and extra pillows. I’ve been sleeping on my back with my bed propped up at one end for 3 yrs now and it would be galling to think it was all for nothing. 🙄
After my last retinal bleed I stopped my decade long practice of daily pilates in case the floor work was contributing to my progression after all. I just started doing pilates again recently, having had SLT in both eyes now, so your results have given me hope that I’ve made the right decision to start doing regular exercise again. 👍🏻
I could draw a picture around the vision loss as well, it quite literally is a black spot just right of centre! I can let you know what the 10-2 is like though and see what the consultant says as well.
I wanted to put books under the bed but my wife wasnt having any of it, apparently it would look terrible, not sure who is bothered since its only us who go into the bedroom!
How did you consultant notice the bleed? Does this show from the standard picture they take, or do you need a dye in your eye?
Did SLT work for you then? My consultant said I could give it ago but because the vision lose is central, he did mention surgery options but I would like to give SLT a try and just monitor very closely.
It is definitely worth exercising, there was a study and after 3 months of exercising 4 times per week IOP dropped 20% on average, plus I just think exercising is generally great for the body and mind, which definitely helps with anxiety.
I went to books under the bed at one end as with wedge pillows I just slid down and I felt they gave me neck ache. Better with whole bed raised one end I find.
Spotting bleeds just needs a doctor doing good regular observation and good training to spot them. Bleeds can be missed as they need checks to be done by a consultant and obviously the NHS is moving to virtual clinics with nurses doing scans and no consultants. I understand retinal bleeds don’t show up on fields or OCT scans. It’s why I pay a specialist in glaucoma to check my eyes every 6 mths or so. Evidence of a bleed may not last more than a couple of months in the eye so 6 mths checks is not perfect but better that yearly or 18 mths waits for a physical exam as has happened on NHS.
My first SLT was deemed to not have significantly lowered my pressures enough. But SLT has other benefits as some research suggests that it also can even out night time spikes and can also affect the untreated eye in positive way. I’d run out of drops options in a very short time so SLT is my replacement third drop. So possible SLT may have stopped my IOPs rising even as it didn’t reduce them, but hard to know.
Anyway my consultant decided to try SLT on my good left eye when the pressures started to rise in that eye. Since my left eye SLT in the summer the pressure dropped from 18 to 16 and is stable at 16 in both eyes now. That’s on target just about. Now the watch is for retinal bleeds which have occurred even in low pressures but hoping now 16 is just low enough. Retinal bleeds are an indication for some glaucoma patients that nerve damage is occurring and vision loss is progressing. I read a research paper that said vision loss often occurs about 18 mths after a bleed on average.
Yup! Gentle exercise is good! No straining!No holding breath! Just getting a tiny bit breathless every day. When you get a report of progression you do temporarily look at everything in your life and say “Could doing this be causing my eye problems?” It takes a while to realise actually just getting on with your life and not stressing is probably a better option for your eye health than worrying about your every move!
thanks so much for sharing this Jon, I have normal tension glaucoma and it has worsened in the Covid-induced gap in checks.
I too have resorted to private treatment and asked my consultant about buying a tonometer. His advice was that it could cause more stress then help, but you’ve made me think again. I’m not as young as you, at 54, but I’ve had it for 12 years and am wondering if I’d have been able to prevent it impacting both eyes had I been able to check myself.
No worries Kate, they are expensive and I definitely had to sacrifice, but I would buy it again if it broke. I don’t understand your consultants logic, I get there are probably more factors to take into account with normal tension, but they still set target pressure which you can track closely with a tonometer. I wish I could lend you mine for a week so you could get an insight into your fluctuations, especially at night.
I’ve already made a couple of positive changes, my pressure is higher in the mornings so I do some gentle exercise in the morning which lowers it, and I’ve knocked 5 points from changing my pillow. I wouldn’t have been able to do that without the tonometer.
I think he’s saying that it’s not needed, Jon, because recent changes to my drops have brought my pressures right down. If I’m religious about medication, I guess, the pressures should stay low. If they go up again though, I’ll definitely purchase.
Out of interest, can I ask what pillow you use now?
That’s good, and at least you know you can buy if you feel like it would be beneficial. I just bought a wedge pillow from Amazon, but I add a few more pillows and try to sleep basically sat up, that seems to work best for me, but I do slide down it and have to readjust.
Without a wedge pillow etc, it builds gradually over night and gets higher and higher. I’ve been able to mostly eliminate the spikes with sleeping position, but only one way to know for sure and that’s use a tonometer.
Thank you, I asked because I'm on monoprost right before going to sleep but my pressure is still 21 after 6 months, so I wondered if maybe I go to bed too late for it to be efective. I have a wedge pillow as well but I am not able to sleep on my back. I envy you for the tonometer and your great doctor. Take care!
The best time to take Monoprost is around 9pm, and that’s because it takes 4-5 hours for it to reach its peak effectiveness, which then coincides when you will be in a deep sleep.
I’m part of a small community that have tononmeters from across the world and everyone struggles with the nighttime pressure, I haven’t heard of an effective drop that will combat it yet.
You might want to chat to the hospital at your next checkup and ask them to add another drop in the morning, that’s what I had to do and it worked quite well. I started on Monoprost like you which brought my pressure down to about 18 and then a second drop in the morning brings it down to about 14. Do you have any damage? Also ask about SLT, if you don’t want to add a second drop just yet.
Many thanks for your advice Jon, my doctor told me to take them right before going to bed, so I was taking it at around 12 night because that way it hurts my eyes less, I have already gone to the doctor but he didnt change it because it went down.from 24 to 21, and I am quite worry about this.
Do you have any defects on the visual field and how old you are? It can take a while to get on top of it to be honest, but I wouldn’t be scared to get a second opinion. It doesn’t sound like the hospital are very worried which says you don’t have much damage to me. Also I don’t think they would change it, they would likely add a second drop which has a small impact on quality of life, so I think they normally only add more drops when they have to. I take Monoprost in the evening and Timlol in the morning and don’t mind putting two drops in.
I’m 34 and really wanted to feel involved in my treatment so I paid to go private, it’s a lot cheaper than you might think and it’s been so much better than the NHS.
I'm 47 and I already have damage in my visual field in both eyes, I will look for another doctor but it's not easy to find glaucoma specialists in my city. Thanks for your concern. Thank's a lot!
Hello Jon, I am new to this site and your contributions are what I have found first, and have really inspired me. I want to buy a tonometer so I can learn and feel more in control. I wonder where you bought yours? Is it the most uptodate ICare? And how did you learn how to use it? When I have searched they seem to be targeted at the professionals rather than on lay folk.. I will need the app etc so I can monitor the results myself. Thanks so much.
Hey Christina, they are extremely easy to set up and use, the Icare home2 is made for personal use. I think there are YouTube videos that show how to use them, but essentially you put a probe in and line your eyes up and press a button. There is a light inside that changes colour when your eyes are aligned. I got my tonometer from the link below:
They are £2000 plus vat, which is expensive but I would buy one again if I lost or broke mine. I do have a central defect though so wanted to closely monitor pressure, and so far it has been invaluable. The main benefit is adjusting the times I take my drops to combat the natural pressure fluctuations I get in the morning and night. When I was first diagnosed, I was given latanoprost and was quickly able to observe that only reduced my pressure to 18/19 from 23, so we added another drop and that reduced it a consistent 15 which was my target. I also experimented with supplements, and discovered taking CBG oil which gave me another 2 or 3 point reduction, so I take that every morning now and it has been consistent.
It’s also really good to see how things like exercise can have a positive impact over pressure and even things like taking a shower. Likewise, I was discovered things that have negative impacts, like staring at computer screens all day, which is my day job, so I combat that by ensuring I get out on a walk at lunch and have regular breaks
Thanks so much Jon, I am looking to buy one today!! Can't wait... did you also buy the probes from them or have you found a cheaper place? It is so helpful when you share your findings too, I will do the same and we can compare what helps/hinders...
It comes with some and I bought more from the same website. I also clean the probes with alcohol and reuse them, up to you if you do that, but I haven’t had any issues and it’s saved a lot of money on probes.
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