New Diagnosis: Right Eye Normal Pressure Glaucoma.

[Timesarrow]

Apparently two yrs ago at my previous eye test with photos of the back of my eye, a note was made that there seemed to be something going on with the optic nerve. I wasn't informed. At my last eye test the new optician reported the same and told me of the previous photo. She referred me to the hospital clinic. The opthalmic consultant concluded that I have normal pressure in both eyes, a damaged optic nerve in my right eye and thinned RE cornea.

He gave me monopost and said to come back in 3 months. No ideas about how I got it (no family history) and I was in such shock that I didn't have many questions or even a memory of other health problems I might have.

I don't understand why reducing the pressure in BOTH eyes is necessary and how this would help at all given I have normal pressure in both eyes.

The notes say OCT: RE ST RNFL thinning borderline mGCL, LE RNFL +mGCL full

HFT: RE borderline GHT, LE normal

CCT: 550 T 600

I had problems with sudden high BP last yr but this doesn't seem to be continal. I have migraines, many many allergies, am short-sighted since I was 10, IBS, and have supremely dry eyes, blepharitis and have had mybomium cysts on my left lid.

Like everyone else I'm worried about losing my sight but I don't like the conveyor belt approach to diagnosis and treatment. The eye drops worry me.

Anyone else got the one eye affected? How did it get treated? Any side effects? I'm 57.

Thankyou for reading

[Eilidhmac]

I know what you mean be conveyer belt approach and I have had the same experience. First two visits, no glaucoma, next visit suspect in one eye. pressures normal. There is no glaucoma in my family either. It is classed as normal tension glaucoma which explains itself. Changes in visual field, optic nerve and cornea etc are suspicious. I had drops for one eye first and went back in 4 months. Now suspect in other eye so I am using them in both. Please don’t be too worried about sight loss, caught this early it is highly unlikely. Hope this helps. X

[Eilidhmac in reply to Eilidhmac]

PS . Reducing pressures is the only treatment for NTG which is a type of Open Angle Glaucoma.

[Timesarrow in reply to Eilidhmac]

Thankyou for your reply. It's interesting and useful to get a range of ideas, opinions and experience for me to arrange my thoughts and get my head round this for perspective. The consultant wasn't very 'dynamic' and I felt a bit spat out. Now I have noone to discuss it with and my gp surgery are useless, can't even get in the door!

[GirlWithTheBow]

I also have normal pressure glaucoma. What is deemed a normal pressure to others is actually high for us. So in order to slow glaucoma down, you need your eye pressures to be even lower than other glaucoma sufferers. I have family history and also very short sighted. Initially i was on lantoprost but after 4 weeks the eye drops were not working so consultant strongly recommended that i do trabeculetomy.

[Timesarrow in reply to GirlWithTheBow]

That's interesting thankyou. The consultant said very little of use. 'Lots of ppl get it, we don't know why, this is what we do'. And being very allergic to lots of stuff (including alcohols - common in meds) I don't want to rush into anything.

[Cornwalleyes]

I have normal pressure glaucoma in both eyes - the only way they can detect it is by the loss of sight on a visual field test and /or looking at your optic nerve, but they do seem to know less about it than the other varieties of glaucoma. No family history, although most of us are shortsighted. I had drops for four years but have now had trabulectomies in both eyes. I think we are all so shocked when we first find out that we don’t ask any questions… but this forum is really useful and I made a list of things to ask at follow up appointments. The good thing is that if caught early it’s rare for someone to lose all their sight.

[NewSh0e]

I was diagnosed with glaucoma 12 years ago (I’m 55 now) and at that point, normal tension was not mentioned. I only found out that it was a specific condition when, having missed my regular NHS check-ups for two years thanks to the pandemic, I saw a private consultant.

It was he who mentioned NTG and told me that the pressures needed to be brought right down. He queried whether I also have a history of migraine and Raynauds (I do) as apparently doctors believe there may be a link. I know what you mean about conveyor belt, the NHS is so stretched you feel almost like you’re imposing by asking lots of questions. Going private is expensive and shouldn’t be necessary but for peace of mind, perhaps something to consider.

I’m now on two sets of drops per day, goal is to get as close to 10 as possible. I’m back to see him on Wednesday; if the pressures have not reduced then I too will be thinking about surgery.

Using the drops in both eyes is precautionary and sensible if it reduces the pressure before it has chance to do more damage.

[Timesarrow in reply to NewSh0e]

Thankyou. I have been considering a private consult to (hopefully) reassure me that the path I'm being given is the correct one for me. I have migraines with auras, and also on one occasion loss of vision. Raynauds is in my family and my circulation is a little compromised...yet more stuff I forgot at my consultation

[Ariommac19 in reply to NewSh0e]

I was diagnosed 3 years ago. I realise only recently I’ve NTG . I’ve always had 20/20 vision, and still feel I’ve pretty good sight. So it was a real shock. However recently the day before I went on holiday ( argh!) A visual field test revealed a change in central vision and my (new ) NHS consultant recommended a trab. I was so scared and surprised at this sudden change. It seemed so drastic and he wanted to give me a general but that’s another story..

My pressures were 13 and 12 and he said it was too high. So when I came back from hol I went to a private highly recommended optometrist who specialises in Glaucoma for second opinion and my pressures were down to 10 and 13 . He felt that the best route would be to try laser then other options eg SLT / stent before going down the trab route. Meanwhile upping drops ( dorzolamide) from 2 to 3 times a day and changing to monoprost at night ( all preservative free) and being seen in a month. The private consult was such a different experience.

[Timesarrow in reply to Ariommac19]

Thankyou for your comment. Its such a crappy experience isn't it?! How did you find your private consultant? Ive another appt in a week but with the same guy to presumably tell me the same stuff. I'd like to get a second opinion from someone not on the NHS treadmill.

[Ariommac19 in reply to Timesarrow]

Hope your next appointment goes well and you get the chance to ask questions. Write them down and that way you can set the pace of the conversation to a better extent that may work for you.

I’m so glad I got the second opinion. If I do need any interventions I feel more inclined to go that way , but that’s just because of the sudden change in my regular NHS consultant - not that I ever saw him over the 3 years since diagnosis, it was always someone different each time.

[Timesarrow in reply to Ariommac19]

Thankyou Can you tell me how you located a private consultation? TY

[Eahldt]

After an optician’s referral and a year of hospital visits I was finally diagnosed, at the same age as you, with glaucoma in my right eye. No family history but I was very short sighted from choked hood in that eye. Pressure was within the range considered normal. I was relieved to apparently only have glaucoma in one eye although someone told me very early on that this was unusual. I was put onto drops, eventually in both eyes. About 10 years ago I had a trabeculectomy in my right eye and later cataract removal. I was aware of sight loss in my right eye but not in my left although my notes said I had glaucoma in both eyes. Two years ago I was told, out of the blue, that I should have a trabeculectomy and cataract removal in my left eye. I felt this was a preventative measure to preserve sight in my left eye. I now continue to use drops in my right eye but not my left. The pressure in both eyes was measured last week at 13, considered on target for me, and I haven’t been told of or become aware of any further sight loss in either eye. I’ve been lucky with the many consultants I’ve had over the years, less so with the appointments system and resulting delay in treatment in the early years. I continue with the NHS but would consider private treatment if I felt the NHS was failing me again. I hope this helps with your understanding of your situation.

[Timesarrow in reply to Eahldt]

Thankyou for your reply, it's been helpful to read everyone's experiences. I did a bit more reading on line and discovered a link with migraine and visual disturbances such as halos and rainbows. I get rainbow auras with migraines. A few yrs ago I slipped and hit my head heavily on the right and the next day I lost my sight temporarily. It was very scary but the doctor just said meh, migraines. I wish I'd not bothered with her and had it looked at, could have been the trigger. I always felt that something was off with the right, and it's not nice to be proved correct. I'm just worried about starting on a path (drops) thst may be wrong for me and make things worse. My IOP is 14 bilaterally btw.

[Eahldt]

Childhood not choked hood!

[Gyfers]

I have normal tension glaucoma with vision loss in my left eye only, but put drops in both eyes. at my consultant’s instructions.

It makes perfect sense to me to take a preventative approach to my good eye in the hope that I won’t lose any sight in that eye. I’d already lost about 15% vision in my left eye by the time I was diagnosed. If I were to wait for damage to show up in my right eye before I started using drops… well, I’d have irreversible damage to both eyes and I don’t want that! I’ll do whatever I can to prevent irreversible sight loss, and it’s no more trouble to put drops in both eyes than it is one.

I’m just relieved to live in a world where these treatments are available to help me try and preserve my sight. Generally, if you use your drops as instructed, there’s a good chance your sight won’t be seriously affected. It’s if you decide not to use them that you start to run a greater risk of blindness.

I do sympathise though, it can be hard to process when you feel like you’ve been rushed through your appointment. The glaucoma UK website has lots of useful information and booklets that can help fill in the gaps. I’d definitely encourage you to take the drops as advised while you work through it all though - you’ve nothing to lose by taking them and lots to gain!

[Timesarrow in reply to Gyfers]

Thankyou for your response. I'm having a difficult time trying to work out what's best especially as the consultant didn't ask many questions about me, and also I forgot A LOT of stuff until I got home.

I have for example also got eczema and this is awful in my right ear. I have, over the last 20 yrs, been prescribed corticosteroids...this is known (I have just read) to damage the optic nerve. I also have so much inflamation in my ear that the nerves on the whole right side of my face are affected and it hurts my eye... could this inflammation be the cause?

I can't tell the anxiety I have been having at even thinking about putting more stuff in my body that could lead to something else developing, at the same time as thinking I don't want to make my eyesight loss worse.

These things dont happen for no reason and I don't like the blanket approach to treatment when the treatment has risks, esp to my normal eye. And once you start the drops you can't just stop as this could make the pressure rise more than it was to start with.

I have dry eyes too and the theoloz has been absolutely awful, I felt like I have tremendous eye strain starting from 5 minutes after application.

I have A LOT of allergies, including to alcohol. Alcohols are in a lot of medications.

I also think the same as you but my scales of decision keep swinging one way then the other!

[Gyfers in reply to Timesarrow]

Hmm I think I have a different approach to you - I think that quite often these things do happen for no reason! Some people get sick, some people don't, in a whole variety of different ways, that's just being human But there are things we can do to help ourselves, by taking advantage of the treatments available.

Sounds like there's a lot going on for you, perhaps you can try and break it all down:

* You're wondering about the cause, whether it could be linked to your eczema treatment - make a written note of questions that you have about this, so you can ask them at your next appointment.

* Your eyedrops are making your eyes sore - you should be able to call the secretary's office at the eye hospital and leave a message about this, asking if they can switch you to different drops. There are quite a few different options. You might want to ask about having drops that don't contain preservative, as some of us are irritated by that.

* You think that the treatment has risks to your normal eye - I don't think that's the case? Perhaps call/email the Glaucoma UK helpline and check some of the facts that are worrying you - it's very easy for our anxiety to suggest things to us, that we then start to think are true.

* You don't like the blanket approach to treatment - but the general approach with glaucoma is to try one set of eyedrops and see if they work, and if they don't try another etc. I think that's pretty standard. It's frustrating when medicine can't say "Here's the perfect solution to your problem" immediately, but it's sadly often the way - medicine is evolving all the time with new research and new possible solutions, it's not a complete, perfect science.

* You're worried about whether there's alcohol in your medication - drop in to your pharmacy and ask them.

* You've had a hard time with other medical treatments over the years and have a lot of understandable anxiety about taking new treatments - can you seek some help for your anxiety as a thing in its own right? It might give you a lot of relief and help give you some clarity about the way forward.

And in the meantime, the best thing you can do to preserve your eyesight is take your drops!

[Bonniecat7]

Hi TimesarrowYour story sounds very similar to mine! The first optician didn't flag up the damage on my optic nerve in my left eye. I had my next eye test 5 years later at a different place......by which time I had developed a small blind patch in that eye that I had no idea about! It was all such a shock at the time, and I was very upset because had it been flagged up by the first optician, I would have started treatment much sooner and perhaps not progressed as far as I have.

Last year I underwent trabeculectomy surgery as it was progressing rapidly. They have to treat normal tension glaucoma quite aggressively because the pressures need to be much lower in order to stop the progress.

The reason you are putting drops in both eyes is to hopefully protect the other one and delay the damage - you don't have glaucoma in just one eye, it always affects both.

Hope this helps to get your head around it. I'm happy to answer any questions you have privately about my own experience. Now I have been knowingly living with the condition for almost 3 years, I've got over the shock and feel that I understand it all as much as I can now.

[Hidden]

Hi Timesarrow, I have found the points you raised & the responses interesting reading as we have similarities. I was 60, when in early March 2020, I was told I had damage to my optic nerve. When services began to operate in March 2021, I was informed I had NTG in both eyes, with the left eye having most damage. I have used Latanoprost in both eyes since diagnosis. With no family history and after reading around the subject, I concluded that overuse of a steroid cream in my ears to relieve eczema had contributed to damage of my eyes. I hadn't seen a GP since 2019, however, when I have pleaded for relief for my ears and discussed my extended use of prescribed creams during a 'phone appointment, I was told this had been very unwise. I have been tempted to go private due to my frustration at poor communication, conveyor belt approach and the long intervals between assessment. I have learned how to navigate the NHS by communicating with the consultant's secretary to achieve an improved service. All the best with your treatment.

[Timesarrow in reply to Hidden]

Aha! I knew I wasn't mad! My ear is a nightmare, I'd gladly remove it and be deaf than keep going with this itching and pain! It's a shame when all these creams, lotions and potions are doled out they don't give more detail about use, maybe use much smaller tubes. My doctor has been very blasé about any of the treatments I've been given and thus I am very cautious about sticking things in my eye now! "Here's what you have, here's what we do... it's safe and effective...next!"

Hope you find relief for your ears too

[Sapeur87]

Thanks for posting. A really interesting and informative thread, helping my understanding as I start to navigate the system and learn about the condition. My symptoms are very similar to yours and have started a thread about it myself in order to keep a running diary that hopefully will assist others too. Good luck. Keep us updated.