A lesson possibly to be learned!

[Jackoh]

Wednesday was a lovely sunny day but as I drove the short distance to the farm shop I couldn't see the cars properly in the distance. When I arrived there I could see folk but at a distance they were just shapes, but no features. Had been out the day before and no such problems. Wednesday afternoon could not read the iPad and vision seemed to be fading. Next day I couldn't see my features in the mirror only the general outline which is when I went for my twelve hour wait in A&E and subsequent admission as blood pressure had gone through the roof.

I didn't think it was the GCA but wanted definite checks to confirm this but wasn't sure exactly what was happening .I had been to an optician a few months ago because I did feel I was having a few problems but she did all necessary tests and said everything fine. I also knew that I had developed cataracts in both eyes and asked her if I needed to get something done but she said they were not a problem.

After being seen by an Opthalmologist it was confirmed that it wasn't a problem caused by GCA but my cataracts were not in a normal place but situated at the back of the eye and the ordinary Opician had not been aware of the extent of the problem and my vision had taken a turn for the worse.

I know I have read on here to actually attend a proper optometrist not just a high street optician but felt everything was OK. I now feel that if I had had the more extensive tests done by a qualified optometrist then I now wouldn't be in the position where I need to have these cataracts done asap as I now find I am unable to drive and in some lights can't read very well at all.

So the moral of this story is ........

[SheffieldJane]

Thank you for the timely lesson Jackoh. I would have been very frightened going through all of that. I hope, you, like people I have spoken to, find that this operation enables you to see better than ever before. 💐

[Jackoh in reply to SheffieldJane]

Thank you Jane for your kind words xx

[Charlie1boy]

Mortified to read this post Jackoh. I guess you weren't present when we had the optometrist come to one of our meetings?

Anyway, I changed to her immediately, and have been very pleased with her.

Lots of love

Paddy

[Jackoh in reply to Charlie1boy]

No I wasn't there!! I'm ok now I've been properly tested and know what it is and know what to do about it. It was the not knowing that was a bit distressing. X

[Rose54]

My Mum has her cataract removed in both eyes this year age 90, worn glasses all her life and now no longer needs them

[Jackoh in reply to Rose54]

Thanks for that encouragement Rose54

[Tamtan2 in reply to Jackoh]

I have pmr and gca I’m awaiting cataracts both to be done. Can’t wait to read, drive watch tv normally again Thanks for your encouraging message.🙏🏽

[markbenjamin57]

Hi Jackie

Sorry to hear about the blip with your eyesight. Apart from the inconvenience it must have been scary in view of the fear of GCA - and all that could go with it. I can only imagine...

At least you've eliminated that, and got a reliable / less serious dx of cataracts? Good point about having your sight tested by an specialist rather than a high street Optician. I'm due an eye test but I hadn't thought of that...

Fingers crossed you'll get the cataracts fixed asap and you can get back to seeing properly - and driving again!

MB

p.s. I didn't write this in Caps as I didn't want to rub it in...

[Jackoh in reply to markbenjamin57]

As usual Mark you made me laugh!!( not writing in capitals😜) I've got you ( not you personally!) in large print anyway.😀

Yes hopefully can now get it sorted now I know what it is!!😜

[markbenjamin57 in reply to Jackoh]

[PMRpro Ambassador]

These are steroid-induced cataracts - a special sort that develop VERY quickly.

All the best!

[Jackoh in reply to PMRpro]

Thank you for that. The reason my blood pressure goes up is so often folk just don't believe you which was initially the response of GP this morning!

[PMRpro Ambassador in reply to Jackoh]

How long will you have to wait?

[Hidden]

Not sure if it applies here in the UK.. but back home I got my glasses from an Optometrist and had all my eye health needs assessed by an Ophthalmologist. Is it the same?

[Mikb in reply to Hidden]

My GCA was actually discovered/suspected by my optometrist who then immediately, as in right from seeing him, sent me to a hospital to see an ophthalmologist that he had set up an appointment with. 5 days later I got out of the hospital.

[Jackoh in reply to Mikb]

Yes you are the second person I have heard of that this happened to. So good it was detected

[HeronNS in reply to Hidden]

There seem to be three eye specialists, at least in North America. The optician sells the eyeglasses, fits them, etc, but it's an optometrist who prescribes them, which an ophthalmologist also does, but the ophthalmologist has had further training, in fact is a medical doctor, who does surgery, treats more serious conditions etc.

aapos.org/terms/conditions/132

[Hidden in reply to HeronNS]

Yes... that's what I had in Florida... I saw an Optician who helped me with frames and was trained to fill a prescription that was written by the Optometrist, but for any issues with the physical mechanics of the eye, like one time a needle (from the Christmas tree) poked me in the eye and I had to see Ophthalmologist

[HeronNS in reply to Hidden]

My eye doctor is an ophthalmologist. He gave me a little course on pred and GCA when I went to be checked after I'd been on pred for a few months. Told me far more than my doctor ever did, including emphasizing how serious GCA is. Turns out I had near glaucoma and had to be seen more frequently for a year, and my GP had never said anything at all about the possibility of GCA, or that side effects of pred can include cataracts or, fairly rarely I think, glaucoma.

[Mikb in reply to HeronNS]

i don't like my ophthalmologist. Because my blood tests all came back normal he kept saying I didn't have GCA though the hospital suspected I did so treated me for it until the biopsy came back positive. After seeing him every 3-4 months since then, he has become nicer to me and I've semi warmed to him.

[HeronNS in reply to Mikb]

I went to mine with only PMR symptoms and being treated with low dose pred. He examined my eyes extremely carefully, checked for any physical signs of GCA, and when it turned out my ocular pressure was higher than it had been before told me to come back in four months in case I developed glaucoma. I'm sure if I'd had GCA symptoms I'd have been very well treated. It's alarming that yours would base his diagnosis on blood tests alone.

[Mikb in reply to HeronNS]

Luckily I was under the care of a rheumatologist as well.

[Jackoh in reply to HeronNS]

Seems like your eye doctor very good

[Jackoh]

No Melissa. You have the choice to go to an optician ( like vision express, Boots , Specsavers, etc) or an independent optometrist. As far as I'm aware very rarely would you see an Ophthalmologist unless you were referred.

[PMRpro Ambassador in reply to Jackoh]

VE, Boots etc do have optometrist trained staff.

[Jackoh in reply to PMRpro]

Really, as it was vision express I went to but the Ophthalmologist said the type of cataracts that I've got would not be seen properly without dilating the pupil first which has never been done at vision express. As regards to when I will have it done - it looks like I will have to unfortunately go private otherwise it is a wait of about 6 weeks just for assessment and possibly another 4-6 weeks wait- possibly 3/4 months in total.

[PMRpro Ambassador in reply to Jackoh]

Oh right - that was automatic with my guy in Scotland (private not VE and co) But when i went to VE I'm sure she did consider it - may even have done it. She was very over-zealous with a referral though. The local eye dept didn't agree with her "very thin retina" diagnosis. Really need to make an appointment ...

Do hope it goes OK - but private isn't cheap is it? Though you have more choice about what lens they use...

[Ruadh in reply to Jackoh]

Ophtho-Optometrist. Need to look for the 'Ophtho' part, private clinics. Specifically trained in all the diagnostics, have all the 'boy's toys' : Heidelburg; Humphrey; OCT; Goldman applanation or the upmarket puffer (not iCare puffer !)

Expect to pay between c.£45 to £75 depending on whereabouts - London being the most expensive.

Many Ophtho-Optometrists work in with the ophthalmologists and following the diagnostics, will refer one to an ophthalmologist. I have had several superb ophtho-Optometrists in the UK : Lincolnshire; Manchester; Dorset. There is a very good set up in Exeter, all the gizmos.

It is a question of choosing your nearest Ophtho-Optometrist, check the site, then make telephone calls to ensure that they have the latest technology. Requires digging, but the results well worth while. Indeed it is quicker to take that route, as the pressure of the diagnostics is taken off the NHS hospital. In addition, your ophtho-Optometrist will have NHS charges listed, less than the 100% pvt patient would pay.

Been there and done the leg work, paid the bills, and been a 100% satisfied with the results - in fact, you will go a long way to find their equal here in France - in fact, I had to go to England to get my glaucoma diagnosis. Was missed here, by a teaching hospital and then by a pvt clinic ! <shakes head> At the top Ophtho Hospital in the middle of Paris, an interne asked me how to operate the OCT machine...plus there was a year's wait for the Humphrey Field of Vision test ! Can't invent it.

The ophtho-Optomertrist does not exist here in France. Has been mooted that the English system should be followed, but, there was a *huge outcry by the ophthalmologists, crying that the bread would be taken from their mouths ! Result, dearth of ophthalmologists, waiting times are about a year, sometimes longer in out of the way places, whose centres are having to cater over a very large area. The ophtho discipline is in a bit of a mess here. Sigh. The best consultants (very few) are run ragged. The Romanians are picking up some of the pieces, but, basically, ophthalmology is not a good scene here, far too many areas are more miss than hit. As for GCA...Ho-Hum. First find a vascular surgeon who knows to take a minimum of 3 cm, and not .09 of 'a' cm then, surprise, surprise, a false negative ! All very tedious.

Bit of a tome guys, but ya know what to do, get diggin, it is right on your own doorstep - or just a couple of steps away <smile>.

[Hidden]

Hi Jackie

That’s a real blow for you, as if the GCA isn’t enough, if you decide on the Private Route make sure the Surgeon is accredited & operating in the local NHS Hospital also; get a Fixed Price Surgery (if still available) it covers everything, Surgeon/Anaesthetist/Hospital/Theatre Fees & any Follow Up.

Very Best Wishes

Angela 🌺

[Jackoh in reply to Hidden]

Thanks Angela for your advice xx

[GOOD_GRIEF]

Hey, Jackoh:

Please don't fret about cataract surgery. Long before PMR and pred, I had anterior cataracts. I go to an opthamologist here in the states, an eye surgeon, just for regular checkups, because while I have excellent vision in one eye, I am legally blind in the other (the result of childhood measles). Light dimmed, colors faded, and the stars went away. I honestly thought it was air pollution. Finally couldn't tell the difference between a 3 and a 5, or a 6 and and 8, or an 8 and a 0. The doctor found them at last in my annual checkup.

As for the operation itself, it's not painful, takes no longer than getting your teeth cleaned (they may keep you around until the anesthetic totally wears off), and you'll be seeing like a 20 year old before the sun goes down. You'll need someone else to drive, because you won't be able to see for a few hours. But once you do, the whole world looks right again.

You must keep your hands away from your eyes, keep your hands clean, take your eye drops as directed, and use the patch they give you to cover your eye while you sleep. Many people get one eye done at a time so that navigating the house in the dark with only one eye patch is easy. The patch is to keep you from rubbing your eye in your sleep. But you certainly can get both done at once, if you wish, long as you don't fall over something in the dark at night.

Really, it was a breathtaking change, and I am still delighted with the outcome almost 8 years later now.

[Jackoh in reply to GOOD_GRIEF]

That's really reassuring thank you.

[Ruadh in reply to GOOD_GRIEF]

In the UK and here in France, both eyes will have to be operated on with a c.3 month time difference. Any surgeon doing 'both' eyes at the same time is in a pile of the proverbial ! This, in order to protect the patient. Safety, the discipline of safety for the patient, is vigorously enforced.

A simple way to help oneself, is, if you already wear specs, is to have the lens that will be the same as the operated eye removed from your specs, and in its place, a clear non-lens replaced. This will help you during the 3 /4 week recovery time, by giving you correct vision in both eyes. It will 'also' give additional protection to the operated eye. You should be advised to be careful during the initial weeks following the cataract surgery : wear wrap around specs to cover your specs, this to stop wind and debris. To wear dark glasses when sunny. To not pick up heavy weights during the recovery period. To be careful about bending down.

When it comes to the second eye, you can ditch the standard specs that you usually use. You will have an excellent operated eye, and will take due care of the second, newly operated eye - wrap-around, care etc.

Cataract surgery, phacoemulsification (I know, sounds like a paint job !) is a doddle. Being careful following the intervention is the draggy bit ! But, heigh, is only 3/4 weeks. What price good eyesight. Take care -

[Jackoh in reply to Ruadh]

Thank you Ruadh. Lots of things I didn't know and hadn't thought about.

[karools16 in reply to GOOD_GRIEF]

Have had both done. Excellent eyesight now. Do EXACTLY what they tell you to do. You'll be fine.

[karools16 in reply to karools16]

Reply meant for Jackoh.

[Jackoh]

Thank you Karools16 for your encouragement

[MisOg50]

The high street opticians employ qualified opticians. How could they not when the NHS is involved. My husband had his eyes tested at a "proper" family run opticians last month and asked for his prescription to get the frames at a high st chain for cost reasons. He commented how thorough painstaking and knowledgeable this chap was. Fast forward to said high st shop in nearby town with frames chosen. The assistant looked at the signature on the form and said, "Oh Stuart.....he works here too." Whereupon Stuart stepped from the consulting room right on cue. So I would think there is opportunity for locum work and not doubt the professionalism in such stores, where the diagnostic machines are impressive.

[Ruadh in reply to MisOg50]

Not all the high street outlets, i.e. Boots, Spec-Savers etc have the full gamut of diagnostic machines. I have phoned them, not just for myself, but also searching for, digging for, friends - various locations in the UK. Therefore, I still prefer to take the Ophtho-Optometrists route.

Yes, you will find qualified optometrists, but if they do not have the full gamut of the machines...! Fully *Research first, then make your move accordingly.

[Jackoh in reply to MisOg50]

One can only speak from one's own experience. The optician was lovely, she has checked my eyes three times this year because I kept feeling there was something wrong but was not able for whatever reason to identify the anterior cataracts which had developed more than thought. I suspect this is. although I can't substantiate this, not because she didn't have the right equipment but these cataracts can only be seen properly when the eye is dilated. This was never suggested and I didn't know to request it at the time as it obviously, certainly at this branch, isn't standard practice.