Confused about pressure and trabs

[BlueMarina]

I had SLT in August. I was told to continue taking Latanoprost/Timolol. When I went to the follow-up 6 weeks later, the pressure was down to 18 L and 24 R from 28 and 34, and the doctor was quite pleased. I had to continue with the eyedrops and come back after 8 weeks . In the meantime I had an appointment at a different hospital for a second opinion, a couple of days ago. They found that my pressure was 28 and 34. As the first hospital had not filed the results of my tests on the computer system (!), they had only my word for it, and said that laser had not worked. They gave me drops and a pill to bring the pressure down and then put me on dorzolamide/timolol and monoprost. The doctor said that my right optic nerve was badly damaged and I should have trabulectomy asap, although 1 in 500 patients go blind with that surgery. Is that true? She also said that she had good hopes the new drops will work. Also, after taking the pill the vision in my right eye improved dramatically. How can that be if the nerve is badly damaged? I am confused and a bit disconcerted with the lack of explanations that I've found so far in hospitals, where I feel intimidated to ask questions or give information. I'm feeling pretty lonely right now and I could do with some words of encouragement.

[Toby_from_London]

Hi BlueMarina,

I have written about this exact issue so you may find reading my previous posts helpful.

As you say appointments are so rushed and it can feel overwhelming when you are dealing with a glaucoma diagnosis.

It took me weeks to get to a place where I felt confident asking questions and feeling like I had some sort of control over my own treatment. Many have said that they have gained more knowledge from this forum than through their doctors, so do reach out as their are lots of lovely people ready to help.

While I can’t obviously comment on your particular case as all eyes are different and it would seem every doctor has a different definition of what constitutes dangerous high IOP, optic nerves are vital to your eyesight and damage to these nerves is permanent.

You are already receiving treatment which is great but if your doctors feel another procedure is necessary please don’t panic, as many users of this forum, including myself, have had successful trabs or MIGS surgery and can talk you through the process.

You can also reach out to the Glaucoma UK Helpline or a Glaucoma UK “Buddy” who can talk you through their personal experiences, which I personally found extremely useful.

Take care and please remember, you are not alone🙂

.

[BlueMarina in reply to Toby_from_London]

Thank you very much, Toby. It helps to know that there are people you can talk to.

[Beecalmed]

Hi! I was in a similar position to you earlier this year. I have been attending a glaucoma clinic in an NHS hospital since diagnosis in 2018. I have had a consultant and doctor disagree on my treatment. One felt SLT hadn’t worked and I needed a Trab. My consultant however wants to wait. He feels I’m young (58yrs) and that he thinks he’s controlling my pressures and slowing progress of vision loss and that we exhaust SLT first and keep 6 mthly checks- although I’m concerned I don’t get OCT scanned every 6 mths it seems. He thinks in balance I’m not at a point for the added risks of a trab.

I, like you, felt very conflicted. It’s hard to hear the words “you haven’t lost too much eyesight yet” when you hear people have had trabs on this site and have lost no sight yet. Who is right? Is the pressure on NHS resources so great in my area that it’s affecting my treatment? Or does my consultant think there’s some treatment on the horizon I might wait for? Who knows? So my solution is I pay for full scans every 6 months to check progress myself at an independent clinic that specialises in glaucoma. It’s costing me £150 per check but I get a full hour and we sit and go through my scans in great detail. I’ll do this as long as I can afford to do this but the way things are going this may not be indefinitely. It has given me peace of mind, temporarily, as at one point earlier this year, my eye health took over my life and eclipsed all that is lovely in my world. I had to do something.

If I see progress there I will be armed to argue my case for surgery on NHS. I’ve so far had SLT in both eyes, on the NHS, and my pressures are now both 16 in each eye, which is on target. On the scans we look for signs of retinal bleeds, which I have got frequently in the past and is a sign pressures may be spiking even when my pressures may be generally very low.

I have many symptoms of normal tension glaucoma but didn’t get that diagnosis initially, I understand, as my IOPs were high twenties at diagnosis.

Hope my story helps. Whatever you or your doctors decide you’re not alone. We’re here to support you. 👍🏻

[BlueMarina]

Hi Beecalmed, and thank you for your story. I used to get upset with my dad who was complaining about his glaucoma all the time, poor guy. Now I understand him. It's the fluctuation of symptoms and the confused information that drive me crazy. One day I see well enough to almost forget my condition, the next everything is blurred. Another time I go to a store or to the airport with lots of electric lights and the glare is unbearable. I want to make sense of it all, but it seems that nobody really knows. It's trial and error. You are doing the right thing keeping checked regularly. SpecSavers do OCT scans for £10, if you want to get an extra check now and then. The worse time for me is in the morning when I wake up, because in my dreams I can see perfectly well...

[Amandeep_GlaucomaUK]

Hi BlueMarina, 

If your optic disc shows glaucoma damage, this can impact you in different ways. For example, although there may be extensive damage to your optic nerve you may still have a good level of central vision. This is because glaucoma starts by affecting your peripheral vision first (the edges of your vision) and slowly starts to move into your central vision. Additionally, if your left eye has better vision and lower pressures you can find that this eye becomes your dominant/stronger eye and as we use both eyes together, your left eye can start to do most of the work visually.  

The pill you were given is usually an oral medication to quickly reduce your eye pressures and is more effective at doing this quickly over glaucoma eye drops. As the medication works and your eye pressures are better controlled you can find that your vision improves as you noted above that your eye pressures in the right eye was 34, however on a day-to-day basis if your eye pressures are fluctuating you can get blurred vision throughout the day. It is good to hear that you did get a second opinion, as every consultant’s goal is to reduce your eye pressures as quickly as possible. In some instances, glaucoma eye drops work very well in controlling your eye pressures for a certain length of time (months/years), in some instance you may also require multiple laser treatment or surgery to get your eye pressures within a range the consultant is happy with. It is difficult as Toby_from_London mentioned that everyone’s case is slightly different, so to comment on specifics is difficult. However, we always advise writing down as any questions you may have before your appointment as sometimes the appointments are so quick and you find you have questions once you get home or some time later. You should also continue to post on this forum and we will continue to help the best we can.  

Regards, 

Amandeep

Glaucoma UK Advisor  

[BlueMarina in reply to Amandeep_GlaucomaUK]

Thank you, Amandeep. This clarifies a lot of things. I was never told that iop fluctuations affect vision. What causes it to fluctuate so much?

[Amandeep_GlaucomaUK]

Hi BlueMaria,

If your eye pressures fluctuate slightly for example going from 10 to 12 or 18 to 21, there will be no real difference in your vision. However in your case your eye pressures in the right eye was at 34 which is quite elevated, and it sounds as though you have angle closure glaucoma. With angle closure glaucoma you can present with more visual symptoms. When the drainage channel in your eye closes or becomes very narrow, the fluid backs up in the eye and you can have symptoms including loss of vision, headaches, and haloes around lights. Once the eye pressures are within a safe range, your symptoms can improve/resolve. Hope this helps.

Regards,

Amandeep

Glaucoma UK Advisor