The Quest To Managing KC - Patient's Perspective

[TBT2211]

Hello all. I am 30. I have moderate KC in my left eye and moderate/advanced KC in my right eye. I had CXL in both eyes. Diagnosed 7 years ago.

I wanted to hear others' views on managing their condition. Somewhat recently, I became frustrated with my care as my RGPS became uncomfortable and caused corneal erosions and my ophthalmologist and optometrist were not proactive in identifying my RGPS fit too tightly around my corneas.

Recently, I have:

1. Met with 2-3 new Opthos and Optos for consultations and discussed care plans.

2. I have purchased my own trial lens kit. My optometrist told me that I saw 20/20 in my LE and 20/30 in my RE. However, when I adjusted my own prescription by adding / subtracting cylinder (which corrects astigmatism), I was finally able to see 20/20 clearly in both eyes with significantly less ghosting and distortion. (Sidebar: If a KC patient struggles to identify 3 out of 5 characters in the 20/20 line, while seeing ghosts of the images, is the KC patient really 20/20?) Lessons Learned. I realized that optometrists do not make money spending 1-2 hours with a KC patient to discover the ideal prescription. By cycling in .25 increments of cylinder (and to a lesser extent sphere), I was able to dramatically improve my visual acuity.

3. Collect topographies and all related KC documents. After a few years of stability post-cxl, I became so complacent (perhaps lazy in hindsight) that my KC would not worsen post-cxl. However, approximately 8 months ago, my ophthalmologist indicated that my KC began to progress once again. Fear and anxiety ensued, but it taught me a valuable lesson. Now, I collect, save, and scan all my topos. I understand the important KC metrics: Kmax, K1, K2, Corneal Thickness, etc. About 2 months ago, my ophthalmologist indicated that my KC readings improved from 8 months. Rather than simply accept his binary prognosis of stability vs. progression, we discussed that my Kmax had markedly decreased from 8 months ago -- indicating that what appeared to be KC progression may actually be warped corneas from ill-fitting contacts.

Though my "quality of life" may have been better before my obsession in learning the ins and outs of KC, I take comfort in knowing that I can ask doctors the difficult questions rather than merely accepting their advisory opinions.

Other Pieces of Information I have Recently Learned About KC Care

1. There does not appear to be a consensus view on the healthiest contact lens for KC between RGP/Piggyback and Sclerals. Some doctors argued definitively that RGPS/Piggyback were healthier because the lens material was thinner--allowing more oxygen to reach the cornea. RGPS/Piggyback have also been a staple of KC patients for years with more long-term research supporting safe use. However, other doctors professed to me that Sclerals were the wave of the future for KC patients. Sclerals vault over the cornea--avoid corneal abrasions. The saline solution used with scleras lubricates the eye/cornea throughout use--helpful for dry eye patients.

2 Different doctors have different views on identifying KC progression. Some doctors place little stake in topographies--identifying human error and faulty machines as producing inconsistent readings (the minority view in my experience). Other doctors only focus on corneal thickness (ex. I had a doctor dismiss my question that my Kmax had increased by 2D's as my corneal thickness was constant). Most doctors that I met looked at the full package: are the K's steeper? is the cornea thinner? do the patient's contacts still provide good acuity? As a KC patient, it is difficult to accept that there is not a single method to identify KC progression.

I hope this post is helpful, and I look forward to hearing other KC patients' methods of managing their condition. We are not doctors, but we need to be educated consumers when interfacing with our care providers. With our Opthos, we cannot simply accept whether our KC is "unchanged" or "worse." Is my Kmax higher? Is it possible that my KC has not progressed, but corneal abrasions or warpage due to contacts are the culprits? Is my cornea thinner or actually thicker (likely due to corneal swelling from contact overuse). With our Optomos, are they delivering optimal vision via contacts or glasses? Although we take up significant chair time, we also pay significant sums of money for contacts ($1k - $2.5k!) -- significantly more than our non-KC contact peers. What is my pin-holed vision? Why is my pin-holed vision significantly clearer than my vision with contacts? Can we try over-refracting again? More cylinder? More sphere?

As a final aside, I had ruled out glasses (even for night time reading) after my optometrist showed me my glasses vision. Finally, I caved and bought glasses because I was no longer able to wear contacts for 14-16 hours a day. The glasses vision was terrible. I looked at my glasses prescription and noticed that my opto ordered cylinder of 2.5D's in both eyes (which is not nearly enough astigmatism correction for a moderately progressed KC patient). My new optometrist showed me glasses vision with -6.00 cylinder and I was able to read my computer! What a ride.

[Lia Williams]

Hello TBT2211,

Welcome to the forum. The patient's perspective is an interesting subject. At our meeting in March we held a discussion called 'Seeing the person, not just the eyes - the patient perspective of KC' and many of the points you raised were discussed.

There does not appear to be a consensus view on the healthiest contact lens for KC between RGP/Piggyback and Sclerals.

As you have discovered KC is very much a bespoke condition with bespoke - others will argue that a specialist KC soft lens is the preferred solution.

If a KC patient struggles to identify 3 out of 5 characters in the 20/20 line, while seeing ghosts of the images, is the KC patient really 20/20?

This is a good question. Certainly it may not seem like 6/6 (20/20) vision in real life. A slightly blurred 6/9 or even 6/12 vision may be preferable to one with ghosting.

The glasses vision was terrible

This is a common complaint. However if someone has not worn glasses for years, and has a strong prescription, it can take some time to get used to the vision with glasses. This is why optoms often 'back off' or reduce the prescription as it easier for the patient to adjust to. Also prescribing glasses for patients with KC is not straightforward as the 'better or worse' question can lead to strange answers, I've often said some letters are better and some worse.

Lia

[CrippsCorner]

Great first post and welcome. I shall have to read through it again to take it all in (in a bit of a rush at the moment) but you certainly make some interesting points. I've found my hospital optometrists to be brilliant, and they spend a lot of time with me. Even now though after getting great results in one eye last month, it's completely deteriorated this month... you just never know what you're going to get day-to-day with this bloody condition!

I agree with the ghosting of images not really being good enough as a vision indicator... "Can you read that?" well, yes I can, but it's not easy and I certainly wouldn't trust driving like it. The fact that I am legal to drive in my left eye yet can't often can't even clearly see peoples facial features is a bit ridiculous.

[TBT2211]

Great, thanks for the replies everyone.

Perhaps, I have become too skeptical -- but I cringe at the notion that optometrists breathe a sigh of relief when their KC patients struggle to squeak out the 20/40 line, and the opto marks 20/40 in her notes (allowing the KC patient to legally drive). Clearly, some KC patients will have corneas that are too steep, irregular, or scarred, and the best optometrist in the world will not be able to correct their vision. However, I suspect that many KC patients can achieve far crisper vision (reading a smaller line, less ghosting, better contrast sensitivity) if optometrists took more time to experiment with different lenses or prescriptions (and KC patients will be able to drive safer!)

Perhaps, I am a perfectionist -- but when optometrists tell me "Great! You are reading 20/30 in your worse eye! That is 1 line better than when you first came in!" I immediately consider the fact that my LAST optometrist told me 20/40 was the best corrected version I would ever achieve in my worse eye. So, when an optometrist celebrates this new achievement, I politely thank them for their hard work and ask them if we could try a few other specifications to further improve my vision.