Keratoconus

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syntax

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So I know there are a few members who have this and have shared information on a few threads.
Thought I would share what I am off to do and maybe it works and gives people some hope

I have lived with Keratoconus for around 25 years now and had spectacles since I was about 6. I have been through all sorts of contact lenses to try get a bit of freedom from spectacles but nothing really stuck or worked for long periods.
I had corneal crosslinking done sometime back to stop the disease and resigned myself to glasses for life and contact lenses for the short times I play sport.

Enter lockdown and I am lying awake bitching about everything quietly to myself and trying to read on my phone with it like 5 cm away from my face with my one eye closed and I just snap. I want to be able to do simple things like make a cup of tea without looking for my glasses or swim in the sea with my kid without having to worry about glasses and/or contacts.
I did some googling, ended up booking another appointment and in a few weeks I am having corneal rings put into my left eye and a lens implanted into my right. A few months later I will have a lens placed in my left eye.

My expected vision is going to be the same or better as what I have now with spectacles which is more than I could ever hope for.
All procedures are reversible and the risks are relatively low for both. The excitement is fairly high!

I will provide feedback after the first procedure and hopefully give the few others there who are looking for a little less reliance on prescription glasses some options
 
syntax said:
So I know there are a few members who have this and have shared information on a few threads.
Thought I would share what I am off to do and maybe it works and gives people some hope

I have lived with Keratoconus for around 25 years now and had spectacles since I was about 6. I have been through all sorts of contact lenses to try get a bit of freedom from spectacles but nothing really stuck or worked for long periods.
I had corneal crosslinking done sometime back to stop the disease and resigned myself to glasses for life and contact lenses for the short times I play sport.

Enter lockdown and I am lying awake bitching about everything quietly to myself and trying to read on my phone with it like 5 cm away from my face with my one eye closed and I just snap. I want to be able to do simple things like make a cup of tea without looking for my glasses or swim in the sea with my kid without having to worry about glasses and/or contacts.
I did some googling, ended up booking another appointment and in a few weeks I am having corneal rings put into my left eye and a lens implanted into my right. A few months later I will have a lens placed in my left eye.

My expected vision is going to be the same or better as what I have now with spectacles which is more than I could ever hope for.
All procedures are reversible and the risks are relatively low for both. The excitement is fairly high!

I will provide feedback after the first procedure and hopefully give the few others there who are looking for a little less reliance on prescription glasses some options
Click to expand...
Cost?
Location?

My keratoconus is stable but cost of full cornea CLs ridiculous.

Can PM me.
 
adielk said:
Cost?
Location?

My keratoconus is stable but cost of full cornea CLs ridiculous.

Can PM me.
Click to expand...

The cost of my procedures is slightly more because of how I am doing it. I could just get the ring put in and then do both lenses 3 months later which will mean only 1 theater cost (Ring is done out of theater). Theater time is pretty pricey and the type of lens inserted differs per person.
Cost breakdowns below

Left Eye Corneal Rings and Right Eye Lens plus possible additional procedure
Ring: 8k
Lens: 15k
Theater time, anesthetic etc: 17k

I will need to do the lens for the left eye about 3 months later which should come in at a total of 25k or there abouts.
If you need any info let me know

Envision Sight Vanderbijlpark (I stay miles away, but I was happiest with this consult so its where I decided to go)
 
Last edited:
syntax said:
So I know there are a few members who have this and have shared information on a few threads.
Thought I would share what I am off to do and maybe it works and gives people some hope

I have lived with Keratoconus for around 25 years now and had spectacles since I was about 6. I have been through all sorts of contact lenses to try get a bit of freedom from spectacles but nothing really stuck or worked for long periods.
I had corneal crosslinking done sometime back to stop the disease and resigned myself to glasses for life and contact lenses for the short times I play sport.

Enter lockdown and I am lying awake bitching about everything quietly to myself and trying to read on my phone with it like 5 cm away from my face with my one eye closed and I just snap. I want to be able to do simple things like make a cup of tea without looking for my glasses or swim in the sea with my kid without having to worry about glasses and/or contacts.
I did some googling, ended up booking another appointment and in a few weeks I am having corneal rings put into my left eye and a lens implanted into my right. A few months later I will have a lens placed in my left eye.

My expected vision is going to be the same or better as what I have now with spectacles which is more than I could ever hope for.
All procedures are reversible and the risks are relatively low for both. The excitement is fairly high!

I will provide feedback after the first procedure and hopefully give the few others there who are looking for a little less reliance on prescription glasses some options
Click to expand...
Thanks for the info. Pls keep us updated. My brother has this. He went for the cross linking to stop it. But can't see at all without glasses and his vision with glasses is not the best.

He tried the hard scleral lenses, but they cut off the blood flow to his eye and he couldn't keep them in
 
Suspect99 said:
Thanks for the info. Pls keep us updated. My brother has this. He went for the cross linking to stop it. But can't see at all without glasses and his vision with glasses is not the best.

He tried the hard scleral lenses, but they cut off the blood flow to his eye and he couldn't keep them in
Click to expand...

Cross linking works and at least stops the deterioration. But he sounds like he might be like me where you can function with glasses (although my left eye is now pretty bad even with them) but you just want some independence.
I have had some success with the hybrid lenses but even then they cause swelling and halos after a while and when i take them out because my eye swells it changes my prescription and I cannot see with glasses for an hour or two.

Will update after the procedure (which is end of the month!)
 
Morning All,

I had the procedure done on Thursday so it is a few days after. Below account of each procedure and current status

Right Eye: Lens Implant
I had this done first and was scheduled for surgery around 10am. You get put under and the entire thing is really quick, I was in and out of theatre in under 30 minutes. They dilate the pupil before hand but put something in during the procedure to go back to normal for a short period. Once I woke up vision was pretty much perfect. There is a clear plastic type cover that you have to keep on for 24 hours but even through that my vision was the same as with spectacles. No pain and very little discomfort.
You have to put tons of different eye drops in but it is nothing uncomfortable or unpleasant, just time consuming as you need to do it every 4 hours and there are 4 types of drops that have to be taken 15 minutes apart.
My vision has been a little up and down in the eye and definitely changes as I get tired.
There are some definite halo effects but they seem intermittent and you get a weird reflection type thing from light sometimes. It is very difficult to judge though as I do not have great vision in the left eye at the moment, I believe when I get the left eye done things will be amazing and side effects easy to live with.
Keratoconus is more than just prescription, but my eye test the next day went from -8.25 to +1

Left Eye: Kera Rings
I had the left eye done a few hours later in the specialist rooms without going under. The procedure is not pleasant. You get some anesthetic drops and they put this steel type thing in your eye to stop it from closing.
From there the laser makes some cuts and some kind of device is pushed down onto the eye. It is not painful but very unpleasant and typically during these times you would look away or close your eyes and go somewhere in your head, obviously here you cannot. The inability to blink makes it very unpleasant and because of the pressure and discomfort this was a lot worse than the cross linking procedure.
Once the device is placed on the eye you lose vision but can still feel the pressure, they then move you across to a separate machine where they help place the kera rings. From here it is rather quick but you wish each second away. There are some cuts done and the rings are then put inside and moved around. A small protective lens is then put over, I believe this is to stop infection and it will be removed tomorrow.
The entire process is quite quick though, maybe 20 minutes tops
Recovery is not bad and there is only a slight discomfort which isnt an issue really.
I used sleeping tablets to knock myself out early the first night and the last few days have been ok.
It is challenging not to be able to rub my eyes properly, i had a really bad eye rubbing habit, especially first thing in the morning.
The difference in vision between the left and right is extremely challenging and unpleasant. My brain gets tired quite quickly trying to compensate and I think after the protective lens gets removed tomorrow I might get a spectacle correction for my left eye just to survive the next few months until they can do the lens implant.
My vision has improved though from -7.5 to -4.5 and the ophthalmologist said with the lens I will have solid vision.

If I had to change anything I would have just done the left eye first and changed the prescription in my glasses to compensate. I really was hoping to be glasses free from here but the difference in vision I am not sure I can live with for 2 to 3 months. It also would save on theater costs if I did both eye lens insertions at the same time, I was impatient and think a little silly.

Overall though I strongly believe this was the right decision and cannot wait for the lens insertion in the left eye!
Will update again after the contact protective cover is removed and then again when anything significant happens.
 
syntax said:
Cross linking works and at least stops the deterioration. But he sounds like he might be like me where you can function with glasses (although my left eye is now pretty bad even with them) but you just want some independence.
I have had some success with the hybrid lenses but even then they cause swelling and halos after a while and when i take them out because my eye swells it changes my prescription and I cannot see with glasses for an hour or two.

Will update after the procedure (which is end of the month!)
Click to expand...
Im excited to hear the outcome, mine is exactly like yours.
Have been through all of the various contact which all sucked, still on glasses with passable but not great eyesight.
I had epi-off crosslinking a few years ago, was a horrible recovery.
 
Hmm ... must consider for the right eye at least.
 
Quick update:
I got a 6k refund as some of the items were cheaper and faster than they anticipated which is always a win.
I am getting a special soft lens for my left eye to help with the vision difference until they can do the next procedure, will have that next Thursday!
 
Another Update:
I got a further refund from the hospital for 2k so the procedure was 8k less than anticipated which is awesome.
I have struggled so much the past 2 weeks with the difference in vision to the point where I was considering going to get prescription glasses or actually reverse the process. The headaches, nausea and general impracticality really brought me down.

I got the soft lens for my left eye today which i can wear permanently for a month at a time and things are amazing. I have depth perception :) but my vision is great and I am feeling so good about things.

So far so good! Side effects from the tons of eye drops are unpleasant but all tolerable.
Very happy
 
syntax said:
I got the soft lens for my left eye today which i can wear permanently for a month at a time and things are amazing. I have depth perception :) but my vision is great and I am feeling so good about things.
Click to expand...
Very happy for you dude. :thumbsup:
 
@syntax, stupid question, but at what point did you get diagnosed with that condition?
how did you know?
did you always have myopia or squinting early on?
how old were you when they found it?
how did they stumble on to this condition is what I'm trying to understand.

I'm trying to maybe figure out if I might have this, that was never accuratly diagnosed,
wear glasses constantly since age 7, and they keep increasing the power,
and told me I'm not an ideal candidate for laskik, due to my age,

but haven't been to a optometrist to see if anything besides my glasses strength has increased.
 
eg2505 said:
@syntax, stupid question, but at what point did you get diagnosed with that condition?
how did you know?
did you always have myopia or squinting early on?
how old were you when they found it?
how did they stumble on to this condition is what I'm trying to understand.

I'm trying to maybe figure out if I might have this, that was never accuratly diagnosed,
wear glasses constantly since age 7, and they keep increasing the power,
and told me I'm not an ideal candidate for laskik, due to my age,

but haven't been to a optometrist to see if anything besides my glasses strength has increased.
Click to expand...

I've had myopia since about 6 years old and was diagnosed with keratoconus at around 12 or 13 I think.
The optometrist picked it up when my prescription changed very quickly and they struggled to get a working prescription. I think they did a pinhole test and then referred us to an ophthalmologist.
The test there is quite straight forward, its like a topographical map of your eye where they can see density. There will be thinness in certain parts in rather irregular places

There are some really good optometrists who specialize in fitting lenses and glasses for keratoconus patients and will probably pick it up very quickly. If you are unsure then go to an ophthalmologist and get the test.
Depending on your age you might not need any treatment as the cornea hardens from about 40 years old (which is what the crosslinking does, it ages the cornea so that it hardens)

There are tons of options for vision correction now from contacts that you sleep with that reshape your eye so you dont need them during the day to insert able lenses like I had. I went to a few specialists who just seemed so disinterested in me and actually gave up for a long time until this procedure.
 
thanks for the detailed answer @syntax
did visit an eye specialist who struggled to see into the back of my cornea as its very difficulty for me to not close my eyes.
did the eye drops that enlarge the pupil, but he still struggled immensely,

but did tell me he can see about 80% of what he needed to see, I found it super painful and uncomfortable.
especially afterwards as the pupil returned to normal.

do you think this condition might be missed? as I dont recall the test you had where the density of the cornea is checked.

will be sure to ask about this next time I go for a vision test,
assuming the part with the jet of air that blows into the eyeball is not too painful.
 
eg2505 said:
thanks for the detailed answer @syntax
did visit an eye specialist who struggled to see into the back of my cornea as its very difficulty for me to not close my eyes.
did the eye drops that enlarge the pupil, but he still struggled immensely,

but did tell me he can see about 80% of what he needed to see, I found it super painful and uncomfortable.
especially afterwards as the pupil returned to normal.

do you think this condition might be missed? as I dont recall the test you had where the density of the cornea is checked.

will be sure to ask about this next time I go for a vision test,
assuming the part with the jet of air that blows into the eyeball is not too painful.
Click to expand...
If you based in Pretoria, check out Saks Bauer in Brooklyn.

Really good. Even eye specialists dont bother repeating some of the tests, if referred by him.
 
eg2505 said:
thanks for the detailed answer @syntax
did visit an eye specialist who struggled to see into the back of my cornea as its very difficulty for me to not close my eyes.
did the eye drops that enlarge the pupil, but he still struggled immensely,

but did tell me he can see about 80% of what he needed to see, I found it super painful and uncomfortable.
especially afterwards as the pupil returned to normal.

do you think this condition might be missed? as I dont recall the test you had where the density of the cornea is checked.

will be sure to ask about this next time I go for a vision test,
assuming the part with the jet of air that blows into the eyeball is not too painful.
Click to expand...

The density test from what I remember is the main diagnostic tool for Keratoconus. The air blow test is for eye pressure and usually to identify things like glaucoma. It was / is not painful for me.
The density test takes about 8 seconds per eye so not too bad.
 
@eg2505 my KC was diagnosed from a corneal topography map when I went in for a Lasik assessment. You stare at a point for a few seconds per eye.

My guess is the test you had was a slit-lamp examination which if you are very sensitive to light can be tricky, a topography map compare should be a lot more comfortable.

Some optometrists also have auto refractors (Image) that can give you rough K readings which can be used as an indicator.
 
ErRoR_nAiK said:
@eg2505 my KC was diagnosed from a corneal topography map when I went in for a Lasik assessment. You stare at a point for a few seconds per eye.

My guess is the test you had was a slit-lamp examination which if you are very sensitive to light can be tricky, a topography map compare should be a lot more comfortable.

Some optometrists also have auto refractors (Image) that can give you rough K readings which can be used as an indicator.
Click to expand...
@ErRoR_nAiK , thanks for that, the slit lamp was extremely uncomfortable, really suffered with that one,
even worse was afterwards when the pupil is fully dilated,
 
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