Hi all, well I had my appointment today with the Neuro-ophthalmologist and things are not great. If you've read any of my previous posts, you may remember a few weeks ago I had a different appointment with a different doc. who told me I needed to have eye surgery within a yrs. time cuz I was in danger of losing my eyesight in one eye due to a combination of an "atypical" cataract, pmr and prednisone. I also mentioned I couldn't aford it! Now today's doc. told me I need this done asap (within a month) as he suspects prednisone is expeditiously speeding up the growth of the cataract. Same problem still exists....$$$. I got so much information today, I've not yet processed it. In fact, I've got a call in to doc. to go over some of what I was told. Something about 4th nerve diminishing??? and several other things. My brain's on overload right now. The only thing that keeps ringing in my ear is "loss of sight"! I'll keep you posted after I speak more with him. Thanks for listening....Lynda
Btw....make that exponentially (whoops!!)
Will hope for the best for you! You know we’re all pulling for you.
A lot has to do with you, when I had my cataracts done, I wasn’t on Prendisone and surgeon advised me
it’s up to me, Medicare didn’t cover it. Suggest you get another opinion, and how bad is your vision.....
in Canada and I had to pay, did them a year apart.
dont let them scare you, I’m a therapist
Just in case anyone else reads this thread.
If when you have your eyes tested and they tell you there is the beginning of cataracts and you are on prednisolone, then if you already were glasses - ask for re-actolite rapide. Sunlight can and does cause cataracts, especially if they have started grow.
If you have the beginning of cataracts and don't wear glasses always use sunglasses when out it sun.
A good opthamologist put me on re-actolite rapide when I was diagnosed with GCA and already had the beginnings of cataracts, they did not move and were still the same size when I went into remission 5 years later.
I still wear re-actolite rapide and they have only grown at tiny bit.
That's all very frightening and doctors don't spare us with information like that! What dose of pred are you on now Lynda? I was told by an opthalmist that pred can affect your eyesight, i.e. put greater pressure on your eyes and make you're eyesight worse at higher levels. When I was on 60mgs pred, I really struggled with my sight and was told there was no point in changing my prescription until I reduced the dosage. I don't have a cataract but wonder would this have anything to do with your eyesight now, if you are on a higher dosage? Wishing you all the best with it, it is desperately worrying when there's any mention of losing eyesight!
You’re a therapist? And that enables you to do what exactly?
If a doctor told me I would possibly lose my sight I too would be scared!
Sure, get another opinion but telling someone to just do what SHE wants to do is irresponsible!
To the OP...good luck.
Buffy, thank you soooo much for your comforting response to my post! I'm literally tearing up 😢 right now at the way you seemingly stood up for me. It's been such a bad day, not to mention an emotional one, and you were so kind to post what you did. This site is so informative and so appreciated ie, dosages and medications and side effects etc, etc....but sometimes I feel we're all guilty of forgetting there are Real human beings at the other side of these posts with real worries and real problems and REAL LIFE'S! Sometimes we just need to hear....I'm here for you! You gave that to me a few minutes ago. Thank you!!
Thank you mrs hobbles. I'm on 16.5mg of prednisone. I think that's kinda a moderately low dosage, but it's Still having it's negative effects, (along with the good benefits, of course!). But I guess the real problem is as it relates to prednisone and my type of cataract (which is supposedly atypical) is it highly exacerbates the growth of the cataract, therefore making my timeframe much more limited. Doc doesn't want me to go off prednisone, but he does say it's imperative I have this done ASAP! I trust this guy. He's from a great hospital in San Francisco, Ca. He spent almost 3hrs with me today (which is almost unheard of)!. I'm going in 3wks for a surgical consultation to see what my options are, both medically AND financially. I guess I'll know more then. Gonna be a LONG 3 wks!!
I'm taking time to respond to each and everyone of you who's sent good wishes. Thanks to you Twopies for your kind words. I'm really needing them today. Very emotional😢. I'll be better tomorrow, but for now, I'm kinda a MESS! Just not one of my better days.
I did have rapid onset cataracts which I was told was probably due to pred. They operated quickly , but they did not explain the dangers.The actual operation is simple and nothing to be afraid of. I was a ridiculous bundle of nerves before hand and felt really silly afterwards.
I hope your Health system has an alternative way of giving you the treatment you require for less $$$
It is going to be a long 3 weeks, my heart goes out to you! That's amazing the doctor spent 3 hours with you, unheard of and no wonder your poor brain was addled after that consultation! So the 16.5mg wouldn't be affecting yior eyesight but is affecting the growth of the cataract, definitely making the next three weeks very anxious ones!
Hope all goes well sorry to hear your news, take care as once again somebody will come along with more good advice
I agree with what you say, loosing your sight is not good, we have just gone through an awful six months with my hubby, he was given some eye drops that nearly cost him his sight. Doctors no nothing
Wow Lynda what a position to be in. Are there no advisory / charitable organisations is America that can offer advice / help ? My heart goes out to you .
The word cataract has me jumping up and down as I'm waiting to "qualify" to have mine done.
I think I was lucky in that Pred. ( eight years worth ) did not seem to speed them up. I've always had 12 monthly free eye tests because my father had glaucoma so my eyes have been well watched. How fortunate we are here though I wonder for how much longer!
I could jump the ever lengthening queue by having them done privately but that really goes against the grain. What will happen to people who can't pay? Well, lynda, your story tells us. I'm horrified. Not sure what it costs here; I believe around £3000 each eye.
Could your consultant put you in touch with possible financial help? It seem ridiculous that someone gives that long consultation and then has to abandon you.
You'll be in and on my mind. Hope thoughts help; wish they could solve the problem.
The most expensive part of cataract ops is probably the type of replacement lens used. The simplest, single vision ones are still not cheap - but far less than some of the fancier ones which are like variofocal specs. It used to be they just removed the clouded lens - and people wore strong glasses. That is probably the sort of surgery done in Africa at the clinics there.
https://columbiaeyeclinic.com/people-need-glasses-cataract-surgery/
https://www.preventblindness.org/what-kind-lens-will-replace-my-cataract-lens
Are there no options to help low income patients?
It must be very frightening for you and when we are in a situation like yours it is difficult to think clearly. Would it help to write down what is a priority? By that, I mean possibly your first thought may be how you pay for the surgery. Would it be worth phoning the hospital in advance of your next appointment and ascertaining whether they can point you in the direction of financial assistance? I'm not sure how it works there but another option would be to contact social services as they may be able to apply for financial help. I realise you may already be following up on this. Best wishes and remember there are people in other countries awake and can respond to your questions when others are asleep.
Why didn't medicare cover it? My husband has had both eyes done, separate times, and there was never any question that it was covered.
Anhaga, as I understand it, Medicare covers 80%. That leaves 20% to the patient. I'll find out more in 3wks when I've got my consultation.