Finally, decided to register

General forum for the UK Keratoconus and self-help group members.

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DigiKera
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Posts: 14
Joined: Fri 12 May 2017 2:26 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and good vision
Location: Israel

Finally, decided to register

Postby DigiKera » Fri 12 May 2017 3:27 pm

I know this discussion board since I was diagnosed, and now I decided to join, so let me introduce myself,

I was diagnosed with Keratoconus at approximately the age of 17. Had treatments of:
August 2012 - CXL (left eye)
October 2012 - corneal transplant (right eye)
April 2015 - topography-guided PRK (left eye)
May 2017 - wavefront-guided PRK (right eye)

Left eye:
SPH + 2.75; CYL - 0.75; Axis 35
'
Last Thursday I had PRK on my right eye, so no results so far. Before treatment:
SPH + 1.75; CYL - 5.0; Axis 55

First all I would like to comment that Keratoconus is a lifetime battle. It ruined my life and my career, and I'm NOT overreacting. It always seems to me that physicians are too ignorant of irregular astigmatism and high order aberrations (HOA). For once, my physician who performed my the corneal transplant on me said there is nothing to do with my left eye (before PRK) and that I can wear glasses or contact lenses. Well, first off, glasses did nothing to improve my vision, and hard rigid contact lens had horrible ghosting effects and "water steam" effect, not to mention the sore eyes after few hours of use. Before PRK I was blind on that eye, now I can read computer screens if I "focus", squint a bit or wear glasses. yeah.. I'm highly satisfied of the results, with the issue that I have is some blurriness, but whenever I try focus with my muscles i can see almost crystal clear (with some minor ghosting upwards the letters), with glasses I see the same but with less crisp and quality. As you can see, only -0.75 cylinder, but that's because most of the astigmatism is irregular. My right eye was horrible, but with glasses I would see good, with the exception that with near-objects I would see blurry and had to "focus" my eye, and also bad ghosting that just makes my head nuts watching TV - so i hope to get rid of these issues post-surgery recovery. Besides me, Does anybody else have problems with adjusting to hyperopic astigmatism correction with glasses?
Left
Cross-linking, Topography-guided PRK
Uncorrected: 20/35-20/25
Spectacles: 20/20
SPH +2.00; CYL -0.75 @35
Scheduled: Toric ICL

Right
Cornea transplant, Wavefront-optimized PRK
Uncorrected: 20/20
Spectacles: 20/15
SPH +1.00; CYL -1.50 @90

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Anne Klepacz
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Posts: 1940
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Finally, decided to register

Postby Anne Klepacz » Sun 14 May 2017 11:33 am

Hello Digikera and welcome to the forum. That's a lot of surgery you've had, so it's good that you're now pleased with the results - and I hope the latest procedure will prove a success. And that you'll be able to get your life back on track. Can't help with your question I'm afraid. I've always worn contact lenses post-graft and now use reading glasses on top.

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DigiKera
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Posts: 14
Joined: Fri 12 May 2017 2:26 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and good vision
Location: Israel

Re: Finally, decided to register

Postby DigiKera » Tue 16 May 2017 2:55 pm

Thank you Anne. I want to update you; it's day 8 of the surgery, and I just went to the clinic in order to remove the bandage contact lens, but apparently my epithelial cells didn't fully recover yet, so I scheduled for two days from now, of which they are expected to heal. So far I'm highly satisfied! I see in my right eye (minus the haze) better than my left eye. I'd guess that I see somewhere between 20/20 to 20/30 right now. It's only the start of the recovery and fully recovery is between 3 to 6 months, so I expect my right eye to reach between 20/20 to 15/20 uncorrected! Wish me good luck with that.. but can't wait =)
Left
Cross-linking, Topography-guided PRK
Uncorrected: 20/35-20/25
Spectacles: 20/20
SPH +2.00; CYL -0.75 @35
Scheduled: Toric ICL

Right
Cornea transplant, Wavefront-optimized PRK
Uncorrected: 20/20
Spectacles: 20/15
SPH +1.00; CYL -1.50 @90

User avatar
Anne Klepacz
Committee
Committee
Posts: 1940
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Finally, decided to register

Postby Anne Klepacz » Wed 17 May 2017 2:43 pm

That all sounds very promising, and I certainly wish you good luck in the months to come!

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DigiKera
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Posts: 14
Joined: Fri 12 May 2017 2:26 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and good vision
Location: Israel

Re: Finally, decided to register

Postby DigiKera » Thu 18 May 2017 12:18 am

Thank you Anne, for cheering me up! I really feel alone with this disease.. like nobody understands, so I feel like a support group could help.

And here is another update: I am pretty sure I've hit an uncorrected visual acuity of 20/20 in my right eye as of now (I know, because my visual acuity of my left eye is 20/20 with spectacles correction, and I see small letter clearer in my uncorrected right eye than my corrected left eye). Vision is still not perfect - main issue is a fainted ghost (diplopia) when reading letters on computer or subtitles on TV, but it's not too much visible, and I also have some ghosting/glares when looking at street lamps at night, but it's not terrible. Besides that all, I have an additional 3-6 months time of recovery so I hope my vision improves and clears. Tomorrow I go to take out the bandage contact lens - usually after that the vision temporarily worsen, but I expect my vision to be at a much better condition at the two weeks mark.

As for my left eye, I don't remember exactly my visual acuity, but I am almost sure it's somewhere between 20/30 to 20/40 uncorrected, but with spectacles correction it's 20/20, but of course vision is not so great because I have 2 annoying "comet tails" (ghosting/glare, dunno how you would call it) that come from light sources, especially like the the red light of ON/OFF on TV or the yellow one from the air conditioner, and especially street lamps at night. the two comet tails go downwards of the light source, although one disappears when blocking vision in the higher part of the eye, and the other when blocking the down part of my eye - one of them is more visible than the other, and the other usually disappears when both eyes are opened, as if my brain learnt to "block" it.

Also, wanted to mention - I am very much a contact lens intolerant. I put the lens (they are uncomfortable.. but ok..), I would see clear although with very visible horrible ghosting, but then after 5 minutes I could barely see anything, as the lens become too cloudy/foggy so I'm unable to see with them - does anybody know why? Besides that they gave me bad photophobia - couldn't open my eyes under the sun. Still have nightmares since of back in 2011-2012 when I had to regularly using the rigid contact len (only 1 eye, couldn't tolerate 2 eyes) on my sore, red eye, because otherwise I couldn't see! The corneal transplant brought relief to my eye and didn't have to touch contacts lens since then (although had numerous attempts)

My Keratoconus started (at least visibly) at around early 2010. The disease progressed so fast and rapidly that after 1-2 years I couldn't see faces and barely could use the computer by squinting them so hard. Today my uncorrected visual acuity: right 20/20; left between 20/30 to 20/40. Corrected visual acuity: 20/20 in both eyes! I'd say that today my vision is the it has ever been since around mid-2010! So people - don't give up!
Left
Cross-linking, Topography-guided PRK
Uncorrected: 20/35-20/25
Spectacles: 20/20
SPH +2.00; CYL -0.75 @35
Scheduled: Toric ICL

Right
Cornea transplant, Wavefront-optimized PRK
Uncorrected: 20/20
Spectacles: 20/15
SPH +1.00; CYL -1.50 @90

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Lia Williams
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Location: Surrey

Re: Finally, decided to register

Postby Lia Williams » Mon 22 May 2017 5:35 pm

DigiKera wrote:I would see clear although with very visible horrible ghosting, but then after 5 minutes I could barely see anything, as the lens become too cloudy/foggy so I'm unable to see with them - does anybody know why?


If you have very visible horrible ghosting it may be that a different lens design might be better for you. There are lots of different designs of contact lenses so a different design might reduce the ghosting substantially. Certainly you should get less ghosting with contact lenses than glasses.

The cloudy'foggy problem I've had with my left eye. I was convinced that that the lens prescription was wrong. However at my follow up appointment I was told that lots of little bubbles were forming under the lens which were causing the vision to cloud over. This problem was resolved by piggy backing the RGP over a soft disposable lens. The soft lens effectively creates a smooth surface and the bubbles stopped occurring.

Lia

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DigiKera
Contributor
Contributor
Posts: 14
Joined: Fri 12 May 2017 2:26 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and good vision
Location: Israel

Re: Finally, decided to register

Postby DigiKera » Tue 30 May 2017 10:37 pm

Lia Williams wrote:
DigiKera wrote:I would see clear although with very visible horrible ghosting, but then after 5 minutes I could barely see anything, as the lens become too cloudy/foggy so I'm unable to see with them - does anybody know why?


If you have very visible horrible ghosting it may be that a different lens design might be better for you. There are lots of different designs of contact lenses so a different design might reduce the ghosting substantially. Certainly you should get less ghosting with contact lenses than glasses.

The cloudy'foggy problem I've had with my left eye. I was convinced that that the lens prescription was wrong. However at my follow up appointment I was told that lots of little bubbles were forming under the lens which were causing the vision to cloud over. This problem was resolved by piggy backing the RGP over a soft disposable lens. The soft lens effectively creates a smooth surface and the bubbles stopped occurring.

Lia

I heard this bubbles theory before. I also heard this cloudy vision may be caused by by cornea rejection of the contact lenses creating excessive tears, and/or hypoxia. It's very frustrating.. Right now I don't think I'm interested in trying contact lenses again because 1) I see good without them, 2) I won't use contact lens on my grafted right eye, because according to my doctor, a graft is never as stable as a a healthy cornea, and therefore using contact lens might change my prescription and induce additional astigmatism 3) I won't use contact lens on my left eye, because the right is the dominant, and it's hard to adjust to having a stronger left, 4) according to many studies, contact lenses increase the risk of rejection and other complications due to mechanical trauma to the eye.

It's day 22 of the surgery in my right eye, and I feel very confident of my vision. I see 20/35 uncorrected in my left eye, and my right eye I don't know yet but I'd guess it's around 20/25 uncorrected. I also feel confident driving at night (although haven't tried yet), as I don't have visible starbursts coming out of car headlights or street lamps as many describe. I just have minor ghosting in both eyes when it comes to these lights.

I tried some old lens of mine on my right eye, and it seems they improve my vision possibly from 20/25 to 20/20. I think the prescription is low myopia, which i had before sutures were removed. It's nothing surprising as hyperopia correction with PRK causes temporary myopia for up to a year, of which afterwards the patient stays at close 0.25-0.50 of the intended correction, so I should expect further corrected of -0.50 diopter of myopia and astigmatism - wait and see. Also regarding my spectacles to my left eye; as you know, it brings it the visual acuity to 20/20, but today apparently I became intolerant to them as they cause me bad eye strain in my left eye when using for near objects.. probably it has to do with my brain adjusting to the new vision in my right eye, and the eye trying to see past the blurriness.

I had a lot of issues with spectacles in the past, of which one of them is double vision for split second when moving the direction of my eyes, as if it takes time for my brain to merge the two images.. It seems to get worse the larger the sphere diopter difference are, and it reduces significantly the better the quality and thinner the lenses are. Today I noticed it again with my left eye and I assume it has to do with my brain adjusting to the new vision, or at least let's hope so... (:
Left
Cross-linking, Topography-guided PRK
Uncorrected: 20/35-20/25
Spectacles: 20/20
SPH +2.00; CYL -0.75 @35
Scheduled: Toric ICL

Right
Cornea transplant, Wavefront-optimized PRK
Uncorrected: 20/20
Spectacles: 20/15
SPH +1.00; CYL -1.50 @90

DrG
Contributor
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Posts: 20
Joined: Wed 23 Oct 2013 12:26 am
Keratoconus: No, I don't suffer from KC
Location: Dallas, Texas, U.S.A.
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Re: Finally, decided to register

Postby DrG » Wed 21 Jun 2017 5:36 am

DigiKera wrote:First all I would like to comment that Keratoconus is a lifetime battle. It ruined my life and my career, and I'm NOT overreacting. It always seems to me that physicians are too ignorant of irregular astigmatism and high order aberrations (HOA). For once, my physician who performed my the corneal transplant on me said there is nothing to do with my left eye (before PRK) and that I can wear glasses or contact lenses. Well, first off, glasses did nothing to improve my vision, and hard rigid contact lens had horrible ghosting effects and "water steam" effect, not to mention the sore eyes after few hours of use. Before PRK I was blind on that eye, now I can read computer screens if I "focus", squint a bit or wear glasses. yeah.. I'm highly satisfied of the results, with the issue that I have is some blurriness, but whenever I try focus with my muscles i can see almost crystal clear (with some minor ghosting upwards the letters), with glasses I see the same but with less crisp and quality. As you can see, only -0.75 cylinder, but that's because most of the astigmatism is irregular. My right eye was horrible, but with glasses I would see good, with the exception that with near-objects I would see blurry and had to "focus" my eye, and also bad ghosting that just makes my head nuts watching TV - so i hope to get rid of these issues post-surgery recovery. Besides me, Does anybody else have problems with adjusting to hyperopic astigmatism correction with glasses?


DigiKera, I agree with you that most eye practitioners seem rather dismissive of the effects of the higher order aberrations. I have been studying the effects of higher order aberrations for more than a decade. The only instrument that can measure them is a wavefront aberrometer, and I first acquired mine in 2006. With time and a great deal of effort, I managed to figure out a way to incorporate the wavefront HOA correction into a scleral lens, and they work very well. You can read the experiences of a few of my patients within this forum. In fact I own a couple of US Patents on the application of wavefront technology in scleral lenses. I am unaware of any other commercially available scleral lens with wavefront-guided optics. We try to keep our fees reasonable for the amount of work that goes into them. I noticed that you have made a few statements regarding our Laserfit lenses in some other threads. I have sent you a private message about that.

User avatar
GeorgeThe2nd
Regular contributor
Regular contributor
Posts: 62
Joined: Tue 23 Mar 2004 7:03 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: GLASGOW

Re: Finally, decided to register

Postby GeorgeThe2nd » Sun 23 Jul 2017 10:10 am


scarymovie
Newbie
Newbie
Posts: 1
Joined: Fri 18 Aug 2017 4:04 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: Finally, decided to register

Postby scarymovie » Sun 20 Aug 2017 12:06 am

DigiKera wrote:I know this discussion board since I was diagnosed, and now I decided to join, so let me introduce myself,

I was diagnosed with Keratoconus at approximately the age of 17. Had treatments of:
August 2012 - CXL (left eye)
October 2012 - corneal transplant (right eye)
April 2015 - topography-guided PRK (left eye)
May 2017 - wavefront-guided PRK (right eye)

Left eye:
SPH + 2.75; CYL - 0.75; Axis 35
'
Last Thursday I had PRK on my right eye, so no results so far. Before treatment:
SPH + 1.75; CYL - 5.0; Axis 55

First all I would like to comment that Keratoconus is a lifetime battle. It ruined my life and my career, and I'm NOT overreacting. It always seems to me that physicians are too ignorant of irregular astigmatism and high order aberrations (HOA). For once, my physician who performed my the corneal transplant on me said there is nothing to do with my left eye (before PRK) and that I can wear glasses or contact lenses. Well, first off, glasses did nothing to improve my vision, and hard rigid contact lens had horrible ghosting effects and "water steam" effect, not to mention the sore eyes after few hours of use. Before PRK I was blind on that eye, now I can read computer screens if I "focus", squint a bit or wear glasses. yeah.. I'm highly satisfied of the results, with the issue that I have is some blurriness, but whenever I try focus with my muscles i can see almost crystal clear (with some minor ghosting upwards the letters), with glasses I see the same but with less crisp and quality. As you can see, only -0.75 cylinder, but that's because most of the astigmatism is irregular. My right eye was horrible, but with glasses I would see good, with the exception that with near-objects I would see blurry and had to "focus" my eye, and also bad ghosting that just makes my head nuts watching TV - so i hope to get rid of these issues post-surgery recovery. Besides me, Does anybody else have problems with adjusting to hyperopic astigmatism correction with glasses?


i really need your help about some subject, im from israel aswell, please contact me


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