Glaucoma?

[IrvineHimself]

Well it's confirmed. The deterioration in my eyesight over the last year is not only due to fluctuations in BG levels and cataracts, but also early stage glaucoma. I took another 'field test' on Monday and yesterday morning the Optician phoned me with the 'definitive' results. I was kind of floored by the news, and didn't fully take in all the details, but I now have an additional referral to the Eye Pavilion for the glaucoma, (I already had one for the cataracts.)

Like I say, I was unable to process most of what she told me, but I seem to recall the terms 'simple' and 'early-stage'. So I suppose that translates as: "Early stage wide angle glaucoma". Apparently, my optic BP is good, so I am not sure what the treatment will be. Assuming, that is, I live long enough to actually get treatment. (Sorry dark humour.)

On a more serious vein, there is another very long, (18+ month,) waiting list for treatment. (That is in addition to the two to six year waiting list for treatment for my cataracts.) In the case of the cataracts, my eyesight will recover after surgery. However, the damage from the glaucoma is permanent. As a result, even though it typically takes twenty+ years for glaucoma to progress to full loss of sight, I am still deeply concerned.

Does anybody have any guidance or experience on the general prognosis?

Irvine

 

[AJLang]

Well it's confirmed. The deterioration in my eyesight over the last year is not only due to fluctuations in BG levels and cataracts, but also early stage glaucoma. I took another 'field test' on Monday and yesterday morning the Optician phoned me with the 'definitive' results. I was kind of floored by the news, and didn't fully take in all the details, but I now have an additional referral to the Eye Pavilion for the glaucoma, (I already had one for the cataracts.)

Like I say, I was unable to process most of what she told me, but I seem to recall the terms 'simple' and 'early-stage'. So I suppose that translates as: "Early stage wide angle glaucoma". Apparently, my optic BP is good, so I am not sure what the treatment will be. Assuming, that is, I live long enough to actually get treatment. (Sorry dark humour.)

On a more serious vein, there is another very long, (18+ month,) waiting list for treatment. (That is in addition to the two to six year waiting list for treatment for my cataracts.) In the case of the cataracts, my eyesight will recover after surgery. However, the damage from the glaucoma is permanent. As a result, even though it typically takes twenty+ years for glaucoma to progress to full loss of sight, I am still deeply concerned.

Does anybody have any guidance or experience on the general prognosis?

Irvine

@IrvineHimself I remember how scary it is to be diagnosed with glaucoma. Big hugs and lots of love to you. I hope my glaucoma story will help to reassure you. I was diagnosed with glaucoma 24 years ago when I was 30 and was referred to the eye department at the hospital where I was seen by a more generalised opthalmologist. I'm not sure that they had a glaucoma specialist back then. I have been on daily/twice daily drops for the glaucoma ever since the glaucoma was first diagnosed and I think that the type of drops of has improved since then.
I understand that cataracts can make glaucoma worse and I had my cataracts removed in my early 40's after I was diagnosed by a glaucoma specialist as having closed angle glaucoma.
I've also had some bouts of laser treatment for the glaucoma which was a lot more straightforward than the laser that I needed for complications caused by an unrelated hemi retinal vein occlusion (blood clot in my eye).
My glaucoma consultant has mentioned the possibility of needing surgery probably more than she should so I got myself referred to Moorfields specialist hospital at that stage and they've been calm about it and just have me there for regular monitoring.
I have lost some patches of vision in my left eye and some in the right eye due to it - but that is mainly only in the last 18 months after 24 years of glaucoma so not too bad at all. Eye wise I can get round by myself, do crafting etc etc etc. It is a shock each time there seems to be a development with it but in retrospect it hasn't been too bad at all given the initial prognosis.
I would suggest that the most important things are:
1. Get the hospital glaucoma appointment ASAP (is there anywhere else a GP can refer you if the Eye Pavilion waiting lists are so long?) and make sure that you get regular checks from them e.g. every six months - at one point i had checks every three months.
2. If they prescribe you with drops I can't stress the importance of of using them as advised and as important as having your insulin at the rights times every once/twice a day (or as recommended) without fail. Put you head back, put the drop in the corner of the eye, near the nose of first eye, press gently down on your eye lid for one minute and repeat on other eye. The pressing down is really important to keep as much of the active ingredient(s) in your eye as possible.
3. If they recommend other treatments e.g. laser surgery don't hesitate to have it. As far as I'm aware the laser does not have any risks.
After all of this there is a stage of surgery that does carry risks but hopefully treatment will improve over time so that you won't need that and as I said I'm now 24 years down the line and Moorfields haven't recommended that surgery yet for me (obviously I'm keeping my fingers crossed that will continue).
I hope this helps. Please don't hesitate to ask me any questions Irvine and good luck with it. xx

 

[IrvineHimself]

Thanks @AJLang, your story is reassuring. As far as asking questions,: At the moment, I am still really struggling to get my head around this. As an engineering apprentice, I knew a number of old welders with 'tunnel vision'; as a result, I am feeling quite overwhelmed.

I am not sure what I can do to speed up the referral to the Eye Pavilion, I have an appointment next week with the Nurse for blood work, with an appointment with my GP the following week. So I will definitely mention both the cataracts and glaucoma to see if they can help in this regard.

Also, I think I will make an in person visit to my Optician. As I say, when she gave me the diagnosis over the phone, I was so shocked, I couldn't really process all that she was saying. So, I do have very legitimate reasons for doing so. In addition, I vaguely recall her saying something about increased testing. As an interim measure, until the referral comes through, If neither Pension Credit, my HC-2 certificate or my old peoples Bus Pass, qualifies me for more than one free OCT scan every 12 months, I am absolutely positive I can spring the £10 for the scan every other 6 months, (or even every 3 months?).

Out of curiosity, do you know how Diabetes affects the prognosis for glaucoma? Also, do you know of any adverse reactions with Diabetic medications? (My up-to-date list is is in my signature.)

Thanks for the prompt reply

Irvine

 

[Deleted member 21371]

Someone I know was diagnosed 15 years ago.
Her glaucoma hasn't really changed since then, but she did have two operation to improve the drainage of the eye fluid, One was just this year though, before that everything was maintained with just eye drops.
Her glaucoma was looked after by her optician and the hospital.
Eye pressure is the thing they watched mostly, the scan will show what has already happened, the pressure is an indicator of what could happen.
If you are going in, ask them what pressure your eyes are, what they should be, and take it from there depending on the numbers.

 

[AJLang]

Just a note that the method used to check eye pressure in opticians is not as accurate as those at the hospital - the optician one tends to read it higher than it is - at the hospital they measure your pressure by looking at your eye through a slit lamp and use a small probe (it is totally and utterly completely painless because they use numbing drops).
The visual field test at the hospital is also a lot more detailed and accurate than that used by an optician.
I‘m almost certain that the OCT scan is not for glaucoma but to check changes with regard to the retina and macular - very important for diabetic changes but not glaucoma. There is a glaucoma scan that is done at the hospital but I don’t think that opticians can do it.
As far as I’m aware there is a tenuous link between diabetes and glaucoma that is still up for debate and it certainly hasn’t affected my glaucoma progression.
The surgery that Travellor’s friend had does have risks hence why they try to use drops and possibly laser before surgery. I’m talking in terms of surgery being an operation but some people do refer to laser as surgery.
As far as I’m aware glaucoma drops do not interact with diabetes medication.
With regard to tunnel vision please try not to worry about that. Thanks to developments opticians now identify glaucoma with equipment that I’m sure wasn’t available to them when you were an apprentice which means quicker detection and earlier treatment. Yes people can still lose their sight to glaucoma BUT eye Doctors now have a lot more tools at their disposal for glaucoma than did. Please make sure you do everything exactly as they say and go for every check up that they offer. If there seems to be a delay when you are expecting an appointment then chase them.

 

[Deleted member 21371]

Just a note that the method used to check eye pressure in opticians is not as accurate as those at the hospital - the optician one tends to read it higher than it is - at the hospital they measure your pressure by looking at your eye through a slit lamp and use a small probe (it is totally and utterly completely painless because they use numbing drops).
The visual field test at the hospital is also a lot more detailed and accurate than that used by an optician.
I‘m almost certain that the OCT scan is not for glaucoma but to check changes with regard to the retina and macular - very important for diabetic changes but not glaucoma. There is a glaucoma scan that is done at the hospital but I don’t think that opticians can do it.
As far as I’m aware there is a tenuous link between diabetes and glaucoma that is still up for debate and it certainly hasn’t affected my glaucoma progression.
The surgery that Travellor’s friend had does have risks hence why they try to use drops and possibly laser before surgery. I’m talking in terms of surgery being an operation but some people do refer to laser as surgery.
As far as I’m aware glaucoma drops do not interact with diabetes medication.
With regard to tunnel vision please try not to worry about that. Thanks to developments opticians now identify glaucoma with equipment that I’m sure wasn’t available to them when you were an apprentice which means quicker detection and earlier treatment. Yes people can still lose their sight to glaucoma BUT eye Doctors now have a lot more tools at their disposal for glaucoma than did. Please make sure you do everything exactly as they say and go for every check up that they offer. If there seems to be a delay when you are expecting an appointment then chase them.

I've had all types of tests by opticians and the NHS.
My last county subcontracted all testing to the opticians, my current area does it all in house.
I pay for private testing in between NHS tests as my optician seems to have newer better equipment.
Particularly with regard to scanning, the NHS still take photos, my optician has a more advanced laser scanner.
It will show any problems with the eye, but can't predict it like pressure testing can.
As to contact or non contact testing, yes, contact is more accurate, but they all give a good indication.
An optician can also refer you to a consultant through your doctor and cut the waiting time dramatically.
I had a floater, saw my optician in the morning, was rang by my doctor in the evening, and seen by a consultant the next day that gave me the all clear, so they are very useful.
This was before covid though.
As you say though, keep chasing, don't let them forget you.

 

[IrvineHimself]

I‘m almost certain that the OCT scan is not for glaucoma but to check changes with regard to the retina and macular

It was because she spotted damage to the optic nerve in the OCT scan that she scheduled the field test.
From Specsavers:

In fact, an OCT scan can help detect glaucoma up to four years earlier than traditional methods.

What is of real concern is that I had an OCT scan back at the end of April at Specsavers, followed by another scan a month later at the Retinopathy clinic and neither spotted the damage. However, the Optician did emphasise it was very early stage.

@travellor, with regard to optic BP: I am sure she said it was okay. Also, according to the Wikipedia page, surgery and laser treatment to increase the drainage angle are normally regarded as only temporary solutions, with the eye-drops being the main treatment.

Since any damage that occurs between now and getting a prescription for the drops from the Eye Pavilion is permanent, the latter is what is causing me the most concern.

.... Thanks to developments opticians now identify glaucoma with equipment that I’m sure wasn’t available to them when you were an apprentice which means quicker detection and earlier treatment. Yes people can still lose their sight to glaucoma BUT eye Doctors now have a lot more tools at their disposal for glaucoma t.....

Thanks, that is very reassuring.

I am going to head down and see her again, once I've woken up from 'la sieste' and ask about testing between now and whenever I finally get a referral.

Irvine

 

[IrvineHimself]

So I went back to Specsavers this afternoon: They were very understanding and I left feeling very reassured. In essence, they said that a private check up would cost £47, which I was more than happy to pay, but they also said that, at least until I get in to see the specialist at the Eye Pavilion, I would be better off just going with my normal annual checkups. They also said that they had caught it at an exceptionally early stage and that I should not be worried about long term damage while waiting to see the specialist.

I was so relieved, I treated myself to a couple of salmon fillets, giant king prawns and rope grown mussels in their shells which I intend to cook in a white wine sauce and serve on a bed of cauliflower rice, finely diced courgette and a couple of portobello mushrooms steamed with olive oil and a dash of mixed herbs. Roughly, it will be about 30 grams of carbohydrate

 

[Deleted member 21371]

So I went back to Specsavers this afternoon: They were very understanding and I left feeling very reassured. In essence, they said that a private check up would cost £47, which I was more than happy to pay, but they also said that, at least until I get in to see the specialist at the Eye Pavilion, I would be better off just going with my normal annual checkups. They also said that they had caught it at an exceptionally early stage and that I should not be worried about long term damage while waiting to see the specialist.

I was so relieved, I treated myself to a couple of salmon fillets, giant king prawns and rope grown mussels in their shells which I intend to cook in a white wine sauce and serve on a bed of cauliflower rice, finely diced courgette and a couple of portobello mushrooms steamed with olive oil and a dash of mixed herbs. Roughly, it will be about 30 grams of carbohydrate

Brilliant.
Very good result.
(Just missing the garlic for me)