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Post Info TOPIC: Keratoconus + 20/20 vision without contacts/glasses?


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Date: Tue Mar 29 12:01 AM, 2016
Keratoconus + 20/20 vision without contacts/glasses?
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Hi all,


my situation is nowhere as bad as most here (yet), luckily, but still causing me a bit of a scare due to nature of this disease.

A few years ago, I started having problems with vision, mostly near vision - looking at computer screen - eyes got tired in the evening to an extent where I couldn't focus anymore. Also, driving at night got a bit problematic duet to reflections of street lights and car lights. Was better in the morning. I visited an optometrist as I wanted anti-reflective glasses (without any correction) - he noted that I have very irregular astigmatism and that he suspects keratoconus and recommended corneal topography. Did that and the result is below- doc said this is indeed keratoconus.

Corneal Topography


In the meantime, I managed to get RGP contacts (Rose K2), which was quite a process as it took 3 different fitters to finally get it close (but not right) - the image contrast with contacts is something else, however the sharpness is way better without contacts, plus when I take them off it takes about 6 hours to get my "normal" back again, which is why I'm stopped using them for now... 
In past 18 months, corneal thickness has not changed much, so it seems stable...

Note that I'm 38, never had to wear glasses or contacts before...
If we forget about problems with low contrast in some parts of my vision, the sharpness of my vision is still measured as 20/20 most of the time. Now that I'm more aware of the defects in my vision, some problems are quite apparent, for example when it's dark I see eliptic halos around bright lights (street lights, car lights,..), which are for some reason smaller when the object is nearer. Driving in the dark has been a challenge for a while.

Also, I recently found an eye exam (refraction measurement) from 2001 which shows only minimal (0.25) CYL, so something has certainly changed since then...

So, the questions:

- Can anyone comment on the corneal topography above - is this only mild keratoconus or a moderate one?

- Is here anyone else who was diagnosed at 35+ and can see pretty well without any accessories? Or has KC appear, but stop progressing soon after?

- How do you all who wear KC contacts see street lights, car lights and other point light sources in high contrast situations? (how I see them looks much like "corrected keratoconus" image on Wikipedia: https://en.wikipedia.org/wiki/Keratoconus)

Thanks!

Peter



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Date: Tue Mar 29 8:51 PM, 2016
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I am not a medical professional, just someone who has had KC for almost 50 years. I think you are at the point that would be rated moderate KC, but toward the mild end. To me, your geometry looks pretty good for KC, which is to say that the cone is symmetric and not too much in your line of sight. My topography isn't quite as nice as yours but it is in the same ballpark. I notice you only posted the left eye maps. Is your right eye unaffected? Also, at age 38, it is likely that your KC will be pretty stable and not progress much more. Keep up with the topography so you know if you are stable.

After years of trying to adapt to rigid contact lenses, which weren't as advanced as they are today, I just settled for the vision that I could get from glasses. My right eye has always been pretty good and the left eye could be corrected well enough that I learned to live with just glasses. The main problem was the halos at night and sometime the double vision.

Last year I needed cataract surgery. With advanced interocular lenses I now have close to 20/20 vision in the right eye and I only need reading glasses for the right eye. However they missed the mark by a lot in the left eye, because the KC makes it hard to figure out what the IOL power should be. As a result, the left eye is hypermyopic meaning it does not come to focus at any distance. I would need a pretty strong positive (nearsighted) lens to see distance and a really strong positive lens to see up close. But you can't wear glasses that are that imbalanced in power because your brain can't manage the difference in image sizes that are created. The difference in power between the eyes is anisometropia, which is another condition treated by contact lenses. So now I need a contact lens for my left eye for three conditions. Whoopee!

I was less than thrilled about the need for a contact lens. However, the optometrist fitted me with a Kerasoft IC. It isn't quite as comfortable as a conventional soft lens, but it is pretty close. It is easy to fit, they did it in 1 1/2 visits (the 1/2 because they didn't quite do it right in the first fitting and they had to do a quick followup), and it takes very little time to adapt to the lens. My vision with the Kerasoft is about 20/25. With a conventional soft lens it is about 20/40 but with the double vision. Since you don't seem to be doing well with the Rose K2, a 6 hour recovery sound bad to me and I'd be seeking a second opinion if the prescribing doctor said otherwise, you might want to give the Kerasoft IC a try.

The downside is that Kerasoft ICs are not inexpensive, around $300 per lens, and they are supposed to be replaced every three months. (But then I don't think there is such a thing as inexpensive contact lenses for KC.) I pushed my first Kerasoft lens to 10 months, but the last 3 months were pretty miserable. I have good insurance coverage through VSP that includes "visually necessary contact lenses." This pays for a full year's supply of lenses. The challenge is that you can only make one claim per year and when you don't know what you need, it is a crap shoot on whether you'll get fitted correctly on the first try. That's why I had to nurse my one lens along for a year. They probably should have ordered the 4 lenses for the full year with the initial fitting because I would have been no worse off insurance-wise if they didn't fit.

If you have vision insurance that includes "visually necessary contact lenses" or "medically necessary contact lenses," and you'll probably have to call the insurance company to find out, be sure your eye care professional's staff understands how to get the best coverage for you. Don't be shy about asking the ECP about the insurance coverage if necessary. Any kind of contact lenses for KC and the initial fitting are expensive. It is great that we now have insurers that do provide some coverage for these expenses. But getting all your benefits is still tricky and most ECPs don't deal with this too often so they may not fully understand how things need to be managed and billed to properly benefit from the insurance.

The Wikipedia vision image doesn't look at all like my experience. I'd say this is a better representation for me:

KC vision.png

The corrected is pretty accurate for computer distance because I looked at the Normal image and then made Corrected match that as best I could. Uncorrected is from memory and it isn't really uncorrected, where I probably wouldn't even know if that was a round dot, a square, or a letter, but rather best vision with glasses. The two images focus at different distances and depending on the size of what I am reading, I can sometime read the "other" image which means that sometimes I can read the 20/25 line but not the 20/40 line. Of course, if that was a headlight, things would look a lot worse.



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Date: Tue Mar 29 11:49 PM, 2016
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Jim, thanks for the exhaustive reply, very informative!

My other eye is affected as well, the topography and values are similar, but it doesn't matter, as central vision is lost in that eye due to another condition (or treatment, to be exact). So as I only have one usable eye, I'm not rushing into any of the treatments (not even RGPs, let alone CXL).
The KC diagnosis was actually made based solely on corneal tomography and slit-lamp examination and I was referred directly to RGP lens fitting - all inside public health system in the European country I am from. I'm now getting ready to get a second opinion / confirm diagnosis based on my exact symptoms and history. My first complaints date back to late 2011 (vision field test), when I was 34, but the "eye fatigue" started years later when I got a computer screen with smaller pixels.

Kerasoft IC sure looks interesting, I was aware of hybrid, piggyback and scleral lens as alternative to RGPs, but not this.

Two more questions for you:
- How did onset of presbyopia affect your vision, combined with keratoconus? Did the refraction change and you required new set of lens / glasses? (one theory is my KC has been there for a while but compensated for by my lens, which is now starting to lose elasticity)
- In your experience, does the recovery time - the time needed to restore your "natural" vision after removing the contact lens - get better with use or was it the same from the beginning? (perhaps I need to give the Rose K2 a chance for more than two weeks?) I would probably accept the discomfort of the RGP with time, but having to either carry the lens all day long or not being able to focus the image till next day is not really acceptable, especially since I can still work with my "natural" vision...

I hope somebody else can comment on that "corrected keratoconus" Wikipedia image. It sure is encouraging to hear from someone that a "perfect correction" can be achieved, at least for computer distance!
And of course I'd be happy to hear others' experiences regarding the recovery time...

Peter

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Date: Fri Apr 1 11:06 PM, 2016
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Presbyopia creeps up on you gradually. I don't recall any refraction change that I would attribute to the addition of presbyopia. It just got to the point where I told the optometrist that I wanted to try bifocals. I think, if anything, the KC let me deal with the presbyopia because it gave me a "progressive cornea". Even now, with artificial intraocular lenses, I have more ability to accommodate than expected. Reading glasses make things more comfortable, but I can cope without them if need be.

I don't think there is such a thing as a "perfect correction" with KC, or even normal eyes. I think the goal is vision that doesn't make you too aware of the shortcomings. I work all day at a computer screen, like a lot of people do, and I am not really aware of my KC as I work.

With the Kerasoft IC, there is not much effect on the cornea and I don't notice any recovery time after taking them off.

It has been a very long time since I wore rigid lenses. What I recall is that vision would be mostly back to "normal" within an hour or two and that was the same from the outset. All I recall changing over time was the tolerance for the lenses. As best I can remember, I always had glasses that I could wear instead of the contacts and I could use the glasses pretty much as soon as I removed the contacts. I did get to the point where I wore the contacts for the full day, but I think that took longer than two weeks. I never liked the rigid contacts and the vision wasn't enough better than what I could get with glasses to give me the motivation to stick with them. I was unhappy when the cataract surgeon suggested wearing a contact lens. I am not sure what I would have done if the optometrist hadn't tried the Kerasoft IC. I was considering additional surgery to correct the IOL power.

I doubt you need a second opinion on the KC diagnosis. More likely you need a different contact lens fitting. Fitting contact lenses for KC is more art than science. Hopefully your health care system gives the fitters enough resources and freedom to try a variety of possibilities to find the visual correction that will work for you. Fitting lenses for a KC patient requires a lot of trial and error.

Good luck with getting a correction that works for you.

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GRS


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Date: Sat Apr 2 8:57 PM, 2016
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Keratoconus comes in all sizes and flavors. It is certainly true that a thick, stiff silicone lens like a Kerasoft does have the ability to change the shape of the cornea, but probably not as much as a stiff RGP lens like the Rose K. If a patient desires a minimum of lens-induced distortion, then a scleral lens is the way to go. Notice I did not say mini-scleral or semi-scleral. I said scleral.

Regarding "art" vs. "science" in KC lens fitting, that depends. For me it is more science than art.

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Date: Fri Apr 8 9:40 PM, 2016
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Dr. G, Are you describing the ability of lenses to provide a reshaping of the cornea in the visual system to improve vision? Or the effect of the lens on the shape of the patient's cornea that becomes noticeable when the lens is removed?

My understanding of the original post, and we all have to understand that any thoughts based on information exchanged in a forum such as this are only general information that can never be a substitute for a medical diagnosis by an eye care professional who actually examines the patient, is that the original poster is experiencing discomfort that prevents wearing the Rose K2 lenses for more than a few hours after 2 weeks of wearing the lenses. When the lenses are removed, the original poster reports that it takes about 6 hours before vision returns to the baseline, uncorrected vision. As best I recall my experience with hard corneal contact lenses, 2 weeks might not be long enough to be come fully adjusted to corneal contact lens wear but 6 hours seems too long for the cornea to recover to its pre-wear shape. My guess is that the Rose K2 is too tight and/or is touching the tip of the cone excessively causing uncomfortable wear and excessive distortion of the patient's natural cornea. Based on my experience, it might not be possible to achieve a fully satisfactory fit with the Rose K2 or with any other corneal lens.

While I have never worn a scleral lens, I agree with Dr. G's opinion that a properly fit scleral lens can provide both the best visual correction, particularly with the advanced visual correction techniques used by Dr. G, the best fit to the irregular cornea, again particularly with the advanced techniques that Dr. G uses to design the back surface of the lens, and the best comfort. I have heard that soft lenses are comfortable not because they are soft but because they extend beyond the cornea. Therefore, I believe a scleral lens can be as comfortable as a soft lens.

The only reason I suggest the Kerasoft IC as an alternative to a scleral lens is because I believe a Kerasoft IC is easier to fit for the average eye care professional. Patients who do not have the opportunity to be fit by Dr. G or another qualified scleral lens fitter, might very well have the opportunity to be fit with Kerasoft IC. Because the soft lens is able to make some accommodations to the patient's corneal shape, most patients can be fit using a small set of trial lenses, eight if I recall correctly. With a modest amount of experience, an eye care professional should be able to fit Kerasoft IC lenses for many KC patients in a single, long visit. No specialized equipment such as a topographer is required. The patient will be able to judge the vision that the Kerasoft IC can provide reasonably well during the fitting.

Will a scleral lens fit by Dr. G give better vision than a Kerasoft IC? Absolutely! But a patient who does not have access to a qualified scleral lens fitter might find that they can get a pretty good result from a Kerasoft IC. And they should be able to get that result from any eye care professional who has received a modest amount of training on how to fit the Kerasoft IC fairly quickly as compared to the fitting of rigid lenses. The biggest downside of the Kerasoft IC is probably cost. They are supposed to be replaced every 3 months, and will certainly have to be replaced in less than a year, so it can be expensive in the long run if not covered by your insurance.

Probably the one area where I have more experience than Dr. G is in experiencing what the average eye care professional (ECP) is capable of when it comes to fitting contact lenses for keratoconus. The reality is that most ECPs, even those who "specialize" in fitting medically necessary contact lenses, don't see a lot of KC patients. And they just aren't very good at fitting lenses for KC patients. Their fittings are not much science, and not that artistic either. For most KC patients the quest is not getting the best contact lenses possible, it is getting tolerable contact lenses that work halfway decently without going broke or making dozens of office visits to a distant office. For anyone with KC who can't relate to my pessimistic view of the contact lens fitting process, count your lucky stars.

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GRS


Optometrist

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Date: Sat Apr 9 5:53 AM, 2016
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Well, JimKC, I do sympathize with you and I am happy that you have gotten good results with Kerasoft. I was just trying to address one statement that I did not agree with concerning thick soft contact lenses and soft maleable corneas. There are studies about corneal warpage and all types of contact lenses, and corneal warpage from thick soft lenses can and does occur. In fact, to be fair, corneal changes can also be induced by mini-scleral lenses. A study on that was just recently published.



-- Edited by GRS on Saturday 9th of April 2016 05:54:34 AM

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Date: Thu Nov 30 8:11 PM, 2017
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Just came across this thread ... I'm about to try sclerals as I don't get stable vision with Kerasoft IC. Are the corneal changes that can happen from scleral lenses reversible if you stop using them for a certain period of time?

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