People and lack of empathy!
Posted , 8 users are following.
In real life we have not told many people that my wife has to operate on both eyes but the few we have told, their initial and delayed reactions have been truly eye opening...
People that we have gone out of our way to help in their times of need have shown 0 empathy.
A simple "how are you feeling", "everything will be ok" would have been enough.
Instead for some reason they think we are interested in their temporary sore muscle related moans while they completely ignore my wife's eye issue.
I feel like saying something to them but my wife says forget it, learn and move on.
There have been couple of kind exceptions from people who are mere acquaintances.
Anyway just needed to vent!!!!
0 likes, 50 replies
soks W-H
Posted
that might be because cataract is the most common condition. and they don't truly understand how unsettling it is for folks with early onset and no loss of accomodation.
W-H soks
Posted
One even said that if she goes blind they will buy a dog for her and then all will be ok!!!
cazms53 W-H
Posted
Wow...hard to believe someone could be so insensitive. In the senior population, it seems so many have had the surgery and they regard it as no big deal. Even at 66, I felt I was young as many are in their 70s when they have cataract surgery. I can only imagine what it is like for your wife, having to make a decision that will impact her vision for the next half of her life. I love how you care so much to research on her behalf. Whatever route she chooses to take, I wish her a great outcome.
W-H cazms53
Posted
Thank you very much for your kind words.
She is my world so this is the least I can do. She is doing her research too.
Sue.An2 soks
Posted
Very true soks till they experience it themselves. Also world we live in with a la k if conversation skills with everyone on their phones nowadays.
Sue.An2 W-H
Posted
I am just back home from a holiday in UK. Weeding through the threads to catch up and sent you a couple of messages without reading this one first. Perhaps those responses are timely.
It is lonely going through this. Even with friends and family there is only so much discussion they can entertain - why forums like these are important and fill a need as we all are in various stages of cataracts - the gift that keeps on giving as I like to say. Even with a good result there is PCO for many of us down the line or other complications.
Perhaps to be kind your close friends may not know what to say. As you said - even I am sorry would suffice but perhaps they think it may be too trite. If your wife can also come on forums she'll find sympathetic ears here.
W-H Sue.An2
Posted
My wife is here reading all posts 😃
I know what you mean about people not knowing what to say but I am not talking about such stuff.
One message would be enough. Instead we have people who are writing about their temporary muscle aches etc.
Why do they think we care about that when they don't care about our much bigger life changing issues?
Plus these are people who we have gone out of our way to be supportive in their time of need. Their issues were not even big!
It is time for spring clean and to wash our hands of such people. It is better to have no friends than lot of fake ones. That is my way of living and thinking anyway 😃
mjcg W-H
Posted
And remember, faults and all, you and especially your wife need friends and family who most likely care more than they can express.
soks Sue.An2
Posted
PCO sucks and noone has really done any long term studies on the incidence of PCO after 10-20-30 years. Young people getting PCO treated are at risk of retina detachment. I wonder if it stops though. My mother did not get her other eye even looked at after she lost her one eye after YAG (surgery at 41, YAG at 48, RD at 48). I tested her good eye yesterday and her correct visual acuity is 20/40 (surgery at 48). so it may have stopped at some point, it has been 25 years since surgery on the second eye.
Sue.An2 soks
Posted
I admit to being frightened of YAG and will likely hold off. The studies are very skewed as it appears mostly done on older people for whom PCO never really experienced. I read one study that if one lives 10 20 30 years (in other words long enough) everyone gets PCO not the 15% mentioned to you at time of surgery. A lot to be concerned about when you are a young cataract patient.
Sue.An2 W-H
Posted
I learned a long time ago to chose friends wisely and I'd rather have fewer true ones than 5 times in fake ones. Most today are so isl media friends who really couldn't be bothered to go out of their way for anyone. Just a system of likes that seem to hold value to those who bother to count them.
soks Sue.An2
Posted
I believe it is 40% at 7 years. The longer the wait the more the vitreous has drained so lesser is the pressure on the retina after YAG.
W-H mjcg
Posted
I know you mean well but reality is not always so.
W-H Sue.An2
Posted
I think the same way.
Sue.An2 soks
Posted
So you are saying it's better to wait before doing anything about PCO? Longer the better? At the moment not inclined to do anything.
soks Sue.An2
Posted
it is a double edged sword. if you wait too long and the PCO increases significantly then you risk floaters after the YaG. but in general if PcO is mild then one should wait.
W-H soks
Posted
Jeez this is all such a mind breaker!!!
Guest soks
Posted
Interesting, I am almost certain to have pco, it is high risk when you are born with cataracts like me, so I would say I expect pco.
But the pressure - does it hold the retina in place, or does it push the retina off?
I have had laser surgery done about ten years ago, where the doctor made a simpel pressure relief hole in both eyes because she was affraid I could develop too high pressure.
I have never had problems of this kind, but it was just to be on the safe side she wanted to do this, the cataract often tend to make less room around the lens, and it is normal that it can cause high pressure, that reduce again with the lens exchange.
soks Guest
Posted
PCO is high risk for younger folks because the body tries to build the lost lens and more epithelial cells are generated as a result. Think about how kids heal faster.
"The IOL and intact capsule help to support the vitreous gel which fills the back of the eye. Movement of the vitreous gel is a key factor in retinal detachments because the vitreous movement can place traction on the retina and lead to a hole or tear which can be the start of a detachment."
I am guessing after YAG the vitreous gel is directly exposed to the IOL. Also men below 50 are more prone to retina detachment after cataract surgery (YAG or no YAG).
Guest soks
Posted
Ok, thanks.
No doubt retina detachment are my biggest worrie in this hole thing, people like me that are born with cataracts also have higher risk of retina detachment.
It is strange all this, the vitreous gel holds the retina in place - but at the same time it is possible to change the vitreous gel, with a quite high succes rate.
My surgery on the left eye seems to have gone very well, without any floaters or anything else, I really have had no issues at all from the surgery, but that retina detachment are in the back of my head all the time, although as the days go by, I get more and more confident.
I guess I just need to give in to fate, and take whatever comes, right now I am extremely happy with the result 😃
soks Guest
Posted
do you know the type of cataract you had?
congentital cataracts are many times polar cataracts which require extremely skilled surgeon as the cataract may be stuck to the capsule or the capsule could be weakened.
mine are posterior subcapsular which are more probe to PCO.
i am glad you are happy but this whole cataract business sucks!
Guest soks
Posted
I had no idea there were different kind of cataracts.
I felt surgery took less than 10 minutes, and the surgeon talked with the nurse about his recent trip to China while he worked with the lens implant, so I think it was quite a rutine case for him 😃
Sue.An2 Guest
Posted
Aside from congentital there are 3 types of cataracts by location:
Nuclear sclerotic cataract. The most common type of cataract.
Cortical cataract. A less common form of cataract that appears as a cloudy opacity in the cortex, the outer part of the lens.
Posterior subcapsular cataract. These cataracts form as opacities on the back surface of the lens.
Guest Sue.An2
Posted
Ok, I have always been told that the cataract was right in the middle of the lens, so I guess it must be the nuclear stuff, even though it sounds like some type of bomb, for a Dane 😃
I was in the garage working on a motorcycle this evening, first time after the surgery.
I was working on some small carburetor stuff, and it was the first time i really had to wear glasses to see what I was doing, I can see now I really did not have presbyopia before.
But at the same time, when I did put on glasses, it was almost like I got x-ray vision, I have never been able to see this well, it was a great pleasure 😃
Sue.An2 Guest
Posted
Lighting also plays (at least for me) a big role in near vision whether a task or reading. Putting on readers in low light conditions really helps or if it's for short time like reading a menu in a posh restaurant I will use flashlight function on my iPhone.
W-H soks
Posted
Could you clarify your above quote. So your mum had cataract in both eyes? She got IOL put in both eyes?
Did PCO develop in both eyes?
She had YAG done in one eye and she had retinal detachment in that YAGed eye and went blind?
So her good eye still has PCO and it has not worsened? I assume she is too scared to operate on it. How old is she now?
soks W-H
Posted
Could you clarify your above quote. So your mum had cataract in both eyes? She got IOL put in both eyes? - YES but 7 years apart. The first eye (left) was operated on in 1987. Cataract was not detected in the second eye or was not significant in 1987. I was in 7th grade at the time and we went to the only place that was using IOLs. She said that after the surgery with that monofocal she no longer needed glasses for near or far. I do remember though that the eye bandage was removed only on the next day after the surgery. Also, the surgery took about 25 minutes then.
Did PCO develop in both eyes? - PCO in one eye for sure which was the left eye which was operated first. The good eye has never been diagnosed as far as I know. Her second eye was operated around the same time as YAG and RD. I remember that we considered her to not even get an IOL and go with the bubble glasses for the right eye since the IOL eye had take turn for the worse.
She had YAG done in one eye and she had retinal detachment in that YAGed eye and went blind? - YES. The retina detached after the YAG. But she went blind because she did not treat the retina detachment as an emergency. After the YAG the vision cleared immediately. But a few days later she started getting reddish curtain over her field of vision whenever she bent down to pick something up. She left that untreated. When the retina detached further blood entered the iris/pupil portion at which point it was not reparable. The eye graduate died and it is white in color now.
So her good eye still has PCO and it has not worsened? - It most likely does because of which her best corrected visual acuity in that eye is 20/40.
I assume she is too scared to operate on it. - She is not OK to even have it dilated. She moved with me couple of months ago and I am trying to convince her to see an eye doctor.
How old is she now? - She is 72 years old.
Sue.An2 soks
Posted
oh Soks how horrible for your mom. Likely the early signs of RD not clearly explained and she likely didn't know what was happening. This makes me more concerned about treating pco - wonder if that YAG procedure / technique has improved over the years or not. Wish it could be treated with drops or something vs a laser.
Hoping you can convince your mom to at least get a consult - even if she decides not to do anything. There may be safer more effective treatments now.
Just one more proof if one lives long enough after cataract pco is inevitable.
soks Sue.An2
Posted
when she git the YAG it must have been early days of YAG so people may not have known about the possible side effects. RD after YAG is for only 1% people so it hurts only when someone is in that 1%.
i was doing research on cataracts in children and it seems many times they remove the posterior capsule as well at the time of surgery to avoid YAG. as children get PCO immediately.
Sue.An2 soks
Posted
Wonder how children can proceed with IOL later in life if they get a YAG at early age?
Guest Sue.An2
Posted
I know two guys (my nephews) that are in their late twenties now, they both had cataracts surgery when they were about 2-3 years old, due to an inherited fast evolving cataract they got in that age. (From their fathers site, he is married to my sister) They were among the first who got iols as children, before that lens was removed without iol implants.
They both developed pco.
One of them was treated for pco 3 times. The first two times was without yag, but with manual surgery, the last time was with yag.
As he grew up, the eyes changed, and the lenses do not have the right power now, maybe they never had the right power, and he is using contact lenses to make up for it (I think something like -6).
He is not that happy with his vision, but his binocular distance vision is 20/20, so it is not something that stops him from living a full life.
He have not had any new issues since he was treated back then 20 years ago, and he never had retina detachment or something like that.
He is considering getting add-on lenses these days.
And the second guy had pco "only" treated with yag.
Yag is much better way to do it, it gives a lot less problems than manual surgery.
He has been lucky, his lenses are still the right power after he have grown up, he rarely uses glasses, and have a quite good vision, with monovision.
He have not had any issues since he was treated for pco 20 years ago, and he really do not think that much about his vision.
And I know a third guy, the father of the two, he also developed cataracts as a child, and back then, I guess about 55 years ago, they removed the lens, and gave him very thick glasses.
When both his children got iols with good results, he wanted that as well to get rid of the heavy glasses, and actually had iols implanted about 20 years ago, many years after his lens removal as a child.
I do not know, if the iols is placed in his own lens capsulars, or if it is add-on lenses he have got, but the new lenses was both set for distance to maximize the outcome, so he is using bifocal glasses for near.
He has quite good vision, and have not had any of the issues with retina detachment or anything like that.
So with all the stories about things going bad, there are also stories about things going good 😃
soks Guest
Posted
that your nephew's power changed is a known complication for calculating child iol power as their vision changes as they grow up.
i am not too sure if add on lenses are an option after the YAG as exposed vitreous risk remains the same. thats why they say hold off on YAG if you require lens exchange.
also for the procedure for the father who got IOL years after non-iol surgery is quite unheard of. so the iol must have been stitched to the iris without a capsule in the back. that must be some serious skill.
W-H soks
Posted
Soks, I felt that in my heart!!!! Your Mum and you have been through some tough times!!! 😦
If I did not read wrong, one of your child has it too? Stay strong!
Guest soks
Posted
Add ons lenses are widely used here, for people who have earlier got monfocal lenses, and are not happy with the result, sometimes only to correct power, but the add ons can also be trifocal, giving freedom from glasses.
In some cases add ons are also used as correction to hit the target if iol power calculation was wrong, instead of correcting with laser.
The add on lens is placed in front of the old iol that are left in place, and the add on lens can also be removed again, both is considered a low risk operation.
I am sure these add ons are also offered to people that have been treated for pco, I do not know if the risk for problems is higher.
I have no idea about the details about the surgery done to the father, but who knows, maybe it was done by a surgeon with some serious ninja skills 😃
soks Guest
Posted
add on lenses are called piggyback lenses and generally used for people with positive dysphotopsia to eliminate the glare. i am sure if they are widely used fir refractive correction in the US especially after lasik.
soks W-H
Posted
just two years ago life was normal. my mother's eye issues were long time ago and we thought that those were a one time bad luck. but in march 2017 we found that my daughter had amblyopia in left eye and the brain had just stopped using the eye. she had no squint or did not complain of poor vision so we never found it out. her corrected vision in that eye was 20/2000. then july that year i woke up after an unsual sunday afternoon nap and one eye was seeing blurry. i thought i had slept on my rimless glasses causing then to go out of alignment. thats when i got diagnosed with PSC. it was very unsettling because you keep getting clear and unclear images which is very bothersome. PSC progress very fast. it made me start seeing 3 of everything in one eye. i was so freaked that i consulted at least 7 surgeons nationally and internationally to fix this. so i feel for what you guys are going through. it throws you off normal.
my daughter has been through vision rehabilitation therapy for the last 2 years. she has improved to 20/32 but that will be it. she wont improve better than that and requires daily therapy at home to maintain.
soks
Posted
i meant i am not sure if they are widely used here for refractive correction with the advent of lasik.
W-H soks
Posted
Soks life can be tough and so unpredictable!!!!
How fast did it progress from you waking up seeing blurry (like my wife's PSC) to seeing 3 of everything?
My wife is going through days when she sees blurred then clear for some days. I want this operation to be done asap!!! 1 month of wait left!
Sue.An2 Guest
Posted
Makes me feel better to hear the good stories and hopeful things work out for the best more often than not. Thank you for sharing those stories.
Sue.An2 Guest
Posted
Add ons - are you referring to piggy back lens where another IOL inserted over previous one?
soks W-H
Posted
How fast did it progress from you waking up seeing blurry (like my wife's PSC) to seeing 3 of everything? - by december 2017 i had triple vision i think and light sources became a circle and near vision was lost. distance vision was uncorrectable ever since waking up that sunday. by april 2018 lights in the good eye started getting a tail. thats when i decided to fix. did not want both eyes bad.
My wife is going through days when she sees blurred then clear for some days. I want this operation to be done asap!!! 1 month of wait left! - i never got clear vision. she might be seeing clearly because the lens might be compensating for the cataract. have her make sure that the cataract eye is still clear. some days my brain would just use the good eye making it less bothersome. but upon closing the good eye my bad eye was still bad.
Guest Sue.An2
Posted
I guess it is what you call piggy back lens, here in Denmark they are called add on lenses.
Some people are getting these, who got monofocal lenses before the premium lenses were an option, or because they simply regret they did not chose a premium lens.
W-H soks
Posted
Soks,
LE- is the one with the worst cataract and apparently it is dense and covers most of the rear part of the lens.
RE- Very fine currently and not interfering with her vision. One of the surgeon said that she could wait 1-2 years to operate on RE. Not sure if I believe her though.
If she covers her RE, she still is able to see but with slight to moderate blur. I think her RE is working hard to compensate for the LE. Plus brain software might be compensating too.
Hudsongrl Sue.An2
Posted
if this helps at all, my 93 year old aunt recently had YAG surgery with a great outcome. no issues at all. clear crisp vision and she has glaucoma too,
Sue.An2 Hudsongrl
Posted
hoping when time comes that will be my result too.
soks Sue.An2
Posted
if you had PCO ur near vision would not be this good. i think YAG would be safe after 60.
soks Hudsongrl
Posted
how many years after the cataract surgery did she have the YAG?
Sue.An2 soks
Posted
near is good as i am mainly seeing out of RE. when i close RE vision at all distances now slightly blurry. Bit of a brown tint too. But with both eyes open see well so not inclined to do anything about it - haven't even seen optometrist yet to actually confirm pco - will wait till next check up,
Hudsongrl soks
Posted
it was over 20 years from surgery to YAG