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  • Jul 1st, 2017 5:41 pm
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[OP]
Newbie
Oct 6, 2016
1 posts

Kerataconus Help!!

Hi everyone, hoping someone can give me some advice as I really don't know what to do....

I was diagnosed with Kerataconus around 2003/2004. I have been getting yearly checkups and everything has been stable. I decided since LasikMD was where I had my initial testing done that I would do new tests which I did in 2016. It was weird because although one of them said that in your 30's most people remain stable, they said their numbers showed a significant drop from 04. They quoted me around $4000 for Corneal Cross Linking with Topography Laser.

I found out from contacting the government that the Kensington Eye Institute has a program where the CLX is funded - they recently lost the funding though for Intact Ring which costs between 1K-2K. The dr. that met me was nice but she didn't seem to listen well and her reviews online for the most part says her surgeries are good but that she doesn't listen well...one person said that she lost sight afterward because of her lack of response - although obviously I don't know the condition that reviewer went in with.

LasikMD just contacted me to let me know that I cannot do CXL and then have the Topography Laser down another time. Has to be one right after the other. That being said, I live in Ottawa so I wonder if it all it's possible to do both in the same city.....but with scheduling never being guaranteed I can see that being unlikely. My Optometrist does think the intact ring and the laser are both good ideas....but he couldn't tell me one way or the other what to do.

I did notice a while back that during the day I saw the needle for the gas twice in 2 different areas when that was more happening at night... I went in early for my annual assessment due to this and was told that there is a bit of progression in my weak eye, still relatively stable though.

Any thoughts or ideas?
PS: I'm in Ontario
1 reply
Sr. Member
Oct 6, 2015
806 posts
409 upvotes
raffle2winprizes wrote:
Jul 1st, 2017 1:41 am
Hi everyone, hoping someone can give me some advice as I really don't know what to do....
I'm not a doctor and I don't give medical advice.
I was diagnosed with Kerataconus around 2003/2004. I have been getting yearly checkups and everything has been stable. I decided since LasikMD was where I had my initial testing done that I would do new tests which I did in 2016. It was weird because although one of them said that in your 30's most people remain stable, they said their numbers showed a significant drop from 04. They quoted me around $4000 for Corneal Cross Linking with Topography Laser.
The rate of progression often slows with age. TG-PRK + CXL is pretty new at this point. Had it been available in 2004 when you were diagnosed, they probably would have recommended that you undergo it immediately.

$4000 sounds like there's at least partial reimbursement, probably for a PTK or something, under a provincial health plan.

Are you wearing a RGP? What's your prescription? Do you know what your pachymetry is? Any maps you can upload?
LasikMD just contacted me to let me know that I cannot do CXL and then have the Topography Laser down another time.
They would never do a PRK without CXL done either simultaneously or first. And the 'nomogram' is very important for situations like these. Most of the time, CXL is done "epi-off", meaning that they basically will do the beginnings of the PRK procedure (epithelium removal), and then use the CXL lamp + Riboflavin. So a combined procedure, assuming a good nomogram, usually makes the most sense.
Has to be one right after the other. That being said, I live in Ottawa so I wonder if it all it's possible to do both in the same city.....
The CXL is done either in the laser room, or in another room in the surgeon's office right after the PRK. A technician will instill anesthetic and riboflavin drops into your eyes every few minutes as part of the procedure. They are not in different cities.
but with scheduling never being guaranteed I can see that being unlikely. My Optometrist does think the intact ring and the laser are both good ideas....but he couldn't tell me one way or the other what to do.
Dr. Lin (at UBC and private practice at PLEC) and Dr. Holland in Vancouver claim excellent results with TG-PRK + CXL and have published a lot on it having over a decade of experience. Curiously though, I've never read a study from them on TG-PRK + CXL + INTACS, so they appear to be achieving most of their results with TG-PRK + CXL alone, making INTACS irrelevant. Of course some cases are so severe that PK is the only option, but it sounds like you still have pretty good vision.
I did notice a while back that during the day I saw the needle for the gas twice in 2 different areas when that was more happening at night... I went in early for my annual assessment due to this and was told that there is a bit of progression in my weak eye, still relatively stable though.
Having undergone a corneal surgery myself recently, I can certainly relate to the fact that defects are far more noticeable under low-light conditions. Simply because more of the cornea is involved in night vision, than in day vision due to pupil constriction.

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