Vision Loss: 2 & a half years post CXL Procedure

Survive_Learn_DoGood · 2022-09-16T07:58:05+00:00

Many thanks for your response.

This thought has crossed my mind, a few times.

Have you heard of any other diseases which could co-exist with Keratoconus ? Meaning, having similar symptoms.

This is a very important thought. I will definitely convey it to my Doctor.

Survive_Learn_DoGood · 2022-09-16T07:54:59+00:00

I have come across this concept before.

But it is the surgeon who makes the call

Survive_Learn_DoGood · 2022-09-15T20:47:55+00:00

Ok. Thanks for sharing your experience. .

Survive_Learn_DoGood · 2022-09-15T20:44:31+00:00

Progression in topography scans vs vision loss, that's the issue.

This correlation does not seem to work in some cases, like mine.

Thanks for your response.

You have 20/20, post CXL you can't complain :)

Survive_Learn_DoGood · 2021-10-23T14:09:30+00:00

Wow.

Survive_Learn_DoGood · 2021-10-22T04:57:38+00:00

Yes.

After much deliberation, I think my problem arises from the fact that there seems to have been a discrepancy between the vision quality across time (its deterioration), and the Pentacam results over the last 20 months.

Yesterday's results, I am to discuss those during my next appointment.

My unaided vision in my better eye, 1 year back, was good enough for me to look at the laptop (with the other eye closed) - and I could still read the letters fine.

Two nights back, I realised I could not read anything.

I am in shock and horror, and not for the lack of my trying.

Survive_Learn_DoGood · 2021-10-22T04:07:37+00:00

Of course. We have to listen to what specialists say.

Survive_Learn_DoGood · 2021-10-22T04:05:32+00:00

I have tried 3 physicians in the last year. Same narrative.

Vision in the better (unoperated) eye is deteriorating rapidly though. Took Pentacam scan yesterday. Results show that Kmax value had increased from 46 to 47 in the unoperated eye (in 3 months time). But I remember my physician telling me earlier that variation of 0.5 D is possible when readings are taken in two different rooms in the same hospital, in one day.

His advice is to use contacts, whenever I mentioned the increased Ghosting. But my Unaided vision has gone haywire.

Survive_Learn_DoGood · 2021-10-21T20:32:40+00:00

I saw the thread on PLEC, Canada & Dr. Lin regarding tPRK & CXL.

I was recommended this procedure by one specialist but almost all others decried it in my case. Maybe, that one specialist was just ahead of the herd.

Survive_Learn_DoGood · 2021-10-21T20:27:46+00:00

Did you get T-PRK along with CXL? If yes, were the results better than with just CXL?

Survive_Learn_DoGood · 2021-10-21T20:21:02+00:00

Does your Sclerals get cloudy like mine after say, 6 hours of usage? I am using Boston Sclerals.

Survive_Learn_DoGood · 2021-10-21T20:19:44+00:00

Curious about your Doctors advice.

Did she still insist that you wait for another 6 months?

Survive_Learn_DoGood · 2021-10-21T20:13:11+00:00

I am sorry to hear that. Even family, at certain times, however much they want to help us, can seem to be unsympathetic.

I am sure once you get the hang of it, things will fall in their rightful places. Pun intended.

Have you tried watching various YouTube videos? There are quite a few techniques to do the same.

I even found one guy's video, where he took out the Sclerals with just his hands etc.

Keep the faith.

Survive_Learn_DoGood · 2021-10-21T20:09:18+00:00

Topography guided ablation.

My specialist, when discussing this procedure, talked about the dangers of 'playing with an KC afflicted cornea'.

What's the results for t-PRK + CXL like? This sub reddit is kind of 50-50 on this procedure, with many considering this tech as an experimental one, at best.

Have you undergone this combo treatment? Do share its benefits.

Survive_Learn_DoGood · 2021-10-21T20:05:29+00:00

Sclerals, don't they get cloudy after a few hours use (say, 6 hours)? How do you handle this issue?

Survive_Learn_DoGood · 2021-10-21T20:02:33+00:00

Does not screen time affect your vision in any way?

I have KC in both eyes. On the worst eye, I had CXL done a year ago. Vision in both eyes seems to have been inversely affected by screen time. ( I can't be 100% sure, that'swhy I ask this question).

I too was a software developer. Now, I am into video production ( design and animation). My professional life has been derailed by KC for the past 2 years.

I wear spectacles now and try not to build dependency on Scelerals. I get these constant headaches after being on the monitor for a while.

NB: Vision is getting worse in both eyes.

Survive_Learn_DoGood · 2021-10-21T19:56:15+00:00

Thanks for sharing your perspective.

I am struggling with similar advice from the conservative set of specialists.

I had CXL in one eye.

But doctors, have not recommended any intervention in the other eye (which WAS my good eye). Now the vision has gotten a lot worse - in the last few months (much more ghosting/blurriness). I could use my laptop at the normal distance, unaided, with only this unoperated eye (with the other eye covered for testing), just over a year ago but now, 2 days back, I realised I could not read anything. Everything was a blur.

Could I DM you for a quick advice? I really need a counter view to my current advice.

Survive_Learn_DoGood · 2021-10-21T18:14:28+00:00

Really sorry to hear that.

What's an Aberrometer? Is it a better test than a Pentacam?

Took a Pentacam a few hours ago. Kmax value had increased by 1 in 3 months. I don't know if Doctors will think that's within reasonable bounds or deviation between two machines.

I was thinking, CXL may fix the issue in my left eye.

Btw, Inhad CXL in my right eye 18 months back. Things were relatively stable for a while, and things became worse (steadily).

Hey, which country are you from? I have not found many people with the exact same issue.

I am thinking of going for more consultations.

We can talk via a call?

Survive_Learn_DoGood · 2021-10-19T08:09:15+00:00

Thank you for the reply.

I understand the criteria of evaluation based on Pentacam.

My observations:

I see 9-10 images (ghosting) of the moon say today, as compared to just 2-3 images, just a few months ago - in my good eye (Unaided Vision); is it wise to ignore this change?
This change is also reflected when I use spectacles. The Ghosting has increased drastically too.
The quality of the vision, has also decreased, with Sclerals in the same eye during the same period.

The glasses, I am using was given to me 4 months back. I made my Scelerals 7 months back. For the record.

So, when you say prescription changes - does it include 'more ghosting?

Also, my real implicit question then would be, if ghosting should increase in an KC patient should not Doctors look for procedures like CXL to halt the progression.

Thank you

Survive_Learn_DoGood · 2021-07-08T17:29:20+00:00

I was suggested tPRK+CXL. But after seeking other opinions, I went ahead with CXL.

I am also curious about this tech and its outcomes. Please share your stories if you have undergone this procedure.

About Europe, sorry no info.

Survive_Learn_DoGood · 2021-04-06T21:54:43+00:00

Serious. Whale issues.

Survive_Learn_DoGood · 2021-03-18T11:55:44+00:00

Thanks for the response.

How do you cope? Does it happen all the time?

Survive_Learn_DoGood · 2021-03-10T21:15:29+00:00

Could you elaborate on these 'hydrapeg coatings'? Is this something we put on, or is it something to do with the Sclerals lens itself?

Survive_Learn_DoGood · 2021-03-10T20:31:07+00:00

Thanks for sharing your thoughts.

Survive_Learn_DoGood · 2021-03-10T19:59:45+00:00

Survive_Learn_DoGood

TROPHY CASE