Clear as Mud: On August 22nd, I was told I had "the... - PMRGCAuk

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Clear as Mud

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On August 22nd, I was told I had "the beginnings" of cataracts, but not to worry... we'd check them again, in a year.

On November 2nd (just 71 days later) I was back at the Ophthalmologist, because I couldn't see! Everything was blurry. Okay, interesting... the cataracts had progressed (at the speed of light, apparently) and both my short and long vision had been significantly impaired! The lenses in both sets of glasses were changed and I as sent on my merry way.

A follow up appointment was made for 3 months (February 3rd); we hoped there would be no significant change, in that short period of time, but just in case... it's better to be safe than sorry!

Today (67 days after my last appointment) I was back in the chair again. Why? Because I cant see anything out of my right eye, and I can barley see out of my left eye.

It was confirmed that the cataracts have again progressed "significantly," further impairing both my short and long vision.

The right eye is now so bad, I am eligible to have the surgery done under the NHS, if I want to wait 6-9 months... and she {the Ophthalmologist} is pretty sure that within a very short period of time, the left eye will also be eligible, under the NHS guidelines.

Seriously?

So, I'm chronically ill, I can't walk, I'm prone to infections and mysterious viruses, and now I'm nearly blind.

🤣🤣🤣🤣

Hmmm? ... they shoot horses don't they?

59 Replies
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PMRpro
PMRproAmbassador

When it rains - it pours!!! Hugs xxxx

But at least the cataracts can be removed! No excuse to wear specs afterwards...

Are they anterior or posterior ones?

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in reply to PMRpro

Ummmmm? YES! 🤣

I have no idea. All she said was that in the right eye (the worst eye) "it" is in the centre of the eye, directly behind the pupil?

PMRpro
PMRproAmbassador
in reply to Hidden

Think that is anterior, the usual sort.

Hidden
Hidden
in reply to PMRpro

Ahhhhh, cool!

Have you ever had an ANCA blood test? (Just curious.)

Btw, I'm developing cataracts too. A few months ago, while driving at night, I noticed oncoming car headlights looked like bright stars. :/

It’s those LED lights that are the trouble!!! They shine straight into the eyes of the oncoming car drivers, especially when going uphill!

PMRpro
PMRproAmbassador
in reply to stellafmdm

I don't like them either - especially the blue tinted ones. But I'm not supposed to have cataracts!

What an awful experience for you. I do hope you get the help you need soon. You just don't need that on top of everything else.

Take care

You might find this interesting....

verywellhealth.com/cataract...

6 to 9 months?! It only takes 20 minutes!! Just how many folk in Brighton need cataract surgery?

That's one thing on your list that could so easily be sorted.

Sending more hugs to you xxxx

You have all my sympathy, not that it does you much good. You know we’re all there for you. As Rugger says, it’s one thing that could be sorted quickly. Does your doctor understand common sense......? Hugs

HI Mel:

On the lengthening list of ailments you've been burdened with, at least this one is easily solved.

If you're still struggling with other things as the date of your surgery approaches, you might want to discuss prophylactic antibiotics for a short term in advance.

But this treatment is fast, virtually painless, and nets the most amazing results within hours of the surgery. For once - near immediate gratification.

Hi my OH got an infection when he last had a cataract op. He is due another op on other cateract later this month. Should he be investigating this antibiotic ahead of the op?

I'm not a medic so I can't say.

Nothing to be lost by asking the question, though, especially if you've been as "under the weather" as our dear mamici has been for some time now.

Yes. This is what I said further down xxxxxx

I agree with everyone else. This is something that can be taken care of quickly with a great quality of life improvement for you. It's all about life quality. Hope you are seeing some improvement in other areas. Been thinking of you ❤️

It is interesting isn’t it that people’s sight has to be so bad as to render them almost helpless. I’m sure the impact of that has far more health and therefore cost impact than it saves keeping them at arm’s length from the waiting list for a bit longer. Academic musings aside, it’s piss poor for you.

It's just not bloody fair, is it? Hugs. x

OMG- this fxsvkng disease! I am so so saddened to hear this. I really have no words, Please be strong! Sendup a hug and lots of prayers.

/mk

I have a word...your word.....fxsvkng. Lol xxxxxxx

I said that in a post the other day too , perhaps we should get one of those pantomime horse costumes and run around like lemons on a ractrack , they might just put us out of our misery! 😋😂😂

Got to laugh or we would cry all the time. So sorry , I know how you feel , so I will just send a hug xx

Condolences!. I was in exactly the same position this time last year and had the operation last June.The waiting time they give is rediculous, I live in Sussex too.

Lost for words. Just hugs all the way. Nightmare for you x

You have my sympathy. My cataracts developed very quickly and, like you, I was almost blind in certain lights before they were removed. I was fortunate in not having to wait too long (but this was quite a few years ago) and hope you too can find a away to get them done quickly. It may be a distant consolation but your sight will be brilliant afterwards

I really feel for you, as if you havent had enough to deal with adjusting to these terrible health issues, now this.

I'm in Brighton if you ever need a shoulder to cry on over a cup of FML.

Sending you much love and virtual hugs.xx

6-9 months for NHS treatment??? I really sympathise with you on this...my eyes deteriorated so quickly..well I thought it was quick!!...over about 15 months!! I was sent for scans, including an MRI of my brain!! Had numerous visits to the Eye Hospital where they did all the same tests, cost me a fortune in new specs!! Eventually I went to contact lenses as they just changed the prescription every time my eyes worsened. Thought I was going mad because I was told there was a small cataract on one eye!! But...as you have realised too..that little b....r just progressed rather quickly. I was told if it impacted on my daily life then I could have it removed...on the NHS!!! I had one done the end of November 2017 and the other eye done the week before Christmas the same year. I can't tell you the difference it has made!! I bet the opticians have missed me because I was never away for months and now haven't been back for a year!! In fact my yearly check must be due. :-)

I need reading glasses now, which took some getting used to, and have a cheap pair of distance specs to correct the astigmatism.

I do hope you get sorted soon..... x

I'm a firm supporter of the NHS, but I did once 'go private' when I had my cataracts removed at the Optegra Eye Hospital in north London in 2011 - they have a number of clinics throughout the country. I was given 'bespoke' replacement lenses which meant I had 20-20 vision for the first time in my life. Nearly 8 years later I've still got excellent eyesight, and still consider it some of the best money I ever spent. I remember looking at the block of flats opposite my living room window and finding I could count the bricks in the wall. It seemed miraculous. I've just looked at Optegra's website and see that the price per eye is £3,495 which is exactly what I paid in 2011.

Mine are coming fast because I am told of the prednisone. Be happy you are in the UK with National health. I cannot get my glasses fixed because I know in 6 months I'll need a new prescription...and no health insurance pays for any of it. I will actually be happy when I can have the surgery and remove both cataracts and throw away the glasses!!! Good luck with yours. !!

Are you in the US?

If you are, cataract surgery is a medical procedure. It's not under "vision insurance".

DorsetLady
DorsetLadyPMRGCAuk volunteer

Unfortunately the NHS is creaking at the seams, and I don’t think some within it realise that steroid induced cataracts progress a lot quicker than “normal” ones, so the waiting list reflects that - and is therefore not that outrageous when compared to other waiting lists for operations.

I know that doesn’t help you, but to the NHS you are just a number, and they probably have patients who have been waiting a lot longer.

‘Fraid that’s how it is!

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in reply to DorsetLady

Sorry if it seemed like I was complaining about wait time, I wasn't. I actually have no intention of waiting.... I will have it done privately ASAP... I cant live like this.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Hidden

I guessed you would probably go private - but I didn’t want to assume.

Rimmy
Rimmy
in reply to Hidden

Dear Melissa How absolutely bloody rotten for you - a never ending list of stuff which is impossibly ridiculous in terms of just trying to get on with life. Only 'good' thing here and others have said it - at least this nasty can be fixed and getting it done fast will sure be the main objective !

This is just so horrid and unbelievably 'unfair' yet again and I know again and again .

Much Love

Rimmy

XXXX

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in reply to Rimmy

Hi Rimmy, Thank you... again. I should have said in my original post that I won't wait for the NHS, I will have it done ASAP, privately. The surgeon she wants to refer me to, has a 4-6 week wait list.. and she has asked that they consider me if they have a "cancelation," any sooner. So fingers crossed. I have known for several weeks that my eyesight was getting worse. I just kept telling myself maybe it was my imagination, since it had been less than 2 months since my last exam!!!! But the Prednisolone seems to be "speeding" things up quite a bit. 🤷🏻‍♀️

And here I will use a word I don't usually use and dislike quite a bit... "Whatever."

patriciawhite
patriciawhite
in reply to Hidden

Well I would be complaining .It.s something that makes you feel a sense of urgency and then they tell you you have to wait .I don,t blame you I have a theory that they make the wait so long because they know that things as precious as eyes will panic people into going private . I would if I needed it depending on the cost .Its not something you want to wait out is it .

powerwalk
powerwalk
in reply to Hidden

Excellent - I didn't want to ask - but thats GREAT if you can do that!!!! Best wishes x

Mipsie
Mipsie
in reply to Hidden

I too had private surgery. It’s taken a few years to ‘pay myself back’ but well worth it. Having been turned down for NHS as not bad enough, on visit to surgeon he said that I shouldn’t be driving!!! The difference afterwards is wonderful, except that dust etc is now obvious 😅

O dear, one more thing to deal with. I had the operations 9 months ago without waiting time. It was a private clinic, but my health. Insurance paied for it. Could you ask. To have the nhs pay and you are helped abroad for example 'oog en welzijn' in Holland. But maybe this is a silly idea. Thinking of you🌅

It's a fab idea darling xxxxxx

For f@&k sakes!! Bloody wait lists!! (I’m waiting 2 years for a knee replacement....(sigh).

Geez Melissa, the pile grows. Hoping there may be another option you can explore. Silver lining is that it sounds like a simple procedure that generates great results. Soon you’ll have super vision and a new knee. Then the NHS better watch out!

Sending hugs (and magical puffs) your way.

Bugger that you have to wait so long can you not get fast tracked?.. I had rapidly worsening cataracts too. Never went blind but very impaired. I just muddled through til I found a surgeon I could afford. The surgery is really easy and fabulous. No pain and little inconvenience. Instant results. The future is bright for you my darling xxxxxxxxxxxxxxx

Sent a pm. Lots of love Meliss! Xx

Melissa,

I had my cataracts removed and it helped me a lot. Be Strong and you will all get through this. My prayers go with you.

Sympathy, lots and lots of sympathy. 🤬 waiting lists.

Hidden
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Sending Love & Hugs 💕

tooooooooooo much ...blast this disease.................bless you for hanging in there xoxo

I'm so sorry! You have had a run of one thing after another.

My cataracts seem to be moving fast too. My recent new glasses, forget it...I'm blurry again already. I'm going to chat with my eye doc soon and remind her I'm a photographer...now with blurry vision... and see what she has to say about timing.

Sorry to hear this. I have had eye issues (macular holes in both eyes and accompanying surgery) which led to cataracts before PMR but got this on NHS. Sad that they give viagra instead of cataract surgery. NHS is the best but it is under pressure (waiting 8 months for ENT apt, still no apt for atrial fibrillation problem - need to have two different tests....). Not sure how expensive cataract surgery is at Moorfields but worth it if you can afford it (Mr Sullivan and his student fixed mine). Best of luck.

Oh dear every one, eyesight is such a worry for us all. I have developed cataracts along with Glaucoma, I went to the hospital and they offered to do my cataracts immediately (NHS) although they are not too bad. My problem is I wear hard contact lenses because I am acutely short sighted and you have to leave them out for six weeks before the operation. Same for having a test for spectacles. Unfortunately I am not in a position to effectively go blind for six weeks and then recovery time, so I have had to take myself off the waiting list altogether for the time being. I am down to 5 mg. and am wondering, has anyone experienced cataracts clearing after stopping steroids, I read somewhere that this sometimes happens?

PMRpro
PMRproAmbassador
in reply to Hellyowl

I think it is extremely unlikely that cataracts will ever clear because of stopping pred. It is a denaturing of the proteins - like a cooked egg - which isn't reversible.

allaboutvision.com/conditio...

nei.nih.gov/health/cataract...

Hope you can get a cancellation Melissa. Just something else to add to the long list of problems you have. You poor girl. Sending hugs. Xx🌷🌷

Seems a long time to wait, I thought 3 months was long enough and I can still see compared to you - having mine done next Friday, I'll swap if you want!.... xxxx

PS: Opt to go on the cancellation list, I had a call the day after pre-assessment but couldn't keep it..

Oh Mamici, you are certainly going through the mill at the moment 😒 The good news is that with your love of life you will come out the other end and make the very best of the life you have. I posted a pic of my garden to help the winter pass, and to my utter suprise it has made me feel better.

hope you get an early appointment for your eyes. The local NHS has saved OH three times this year and he is now on a very expensive drug called eltrombopag,

I hope you have the sunshine we have to brighten your day. Jen

This is exactly what happened to me. Before I started predisolone I had no problem. Then I

began that in the November and by the January I was having fuzzy vision. I was very grateful not to have lost my vision with the diagnosis of GCA but also very frightened. It cost me to have to keep updating my glasses - varifocals - but I needed to be able to drive with my disabled husband. Now six years down the line and cataract surgery four years ago I'm still having vision problems. Perhaps I was naive but my eyes have not stayed the same with the new lenses but continue to give me cause to worry.

Sorry not to have been able to be more reassuring.

Melissa do understand about the eyes as this has just happened to me. Have just had my first eye done- Dec 12 ( privately) and now I can see that other needs doing very soon. Add that onto everything else going on and it must seem to you never ending. Fortunately the eyes can be dealt with effectively and quickly and then you can move on to tackling the other things. But so so hard for you at the moment. Praying for you🙏Lots of love xx

So sorry that you have had yet another blow.Heres hoping that that’s it now and this New Year will prove to be a fantastic one for you ,especially health wise ! I do hope that you get a chance to recover and regain your strength. Very best wishes and good luck.

Best wishes and much love to you.

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