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Oh, the irony of it all: a contact lens intolerant person who can only see by way of scleral contact lenses.  Well, we tried.

Last week, I returned to my optometrist/lens fitter after trying out my second pair of sclerals.  Vision-wise, the first pair seemed pretty good for someone who really can’t see well, but a couple things were off: I still couldn’t see close-up at all, the TV created some weird, double vision—compared to my normal, ghosted vision—and night driving was still a ghosted mess when I looked at anything illuminated.  I should add that sclerals do help with my light sensitivity, but I still can’t drive into the sun, which is rather hard to avoid unless you can consistently drive north and south and never turn.

Due to the aforementioned issues, my optometrist changed my prescription as he felt my first pair was too strong, and hoped that would help with the near vision and the TV issue. Well, something was very odd about that second pair and I’m blaming the lab, as my doctor is really good.  They seemed okay in the office, but I went to a big box store afterwards—the best place to test out your vision—and I was back in the graveyard, also known as the ghosted mess.  I couldn’t see people’s faces again and everything in the store was in multiples, and not because it was a promotion.

Then, I got very worried as I had doctor appointments I had to drive to the next week and couldn’t see, even though I drove with no contacts for 8 odd months; well, it’s not like I had a choice.  Back to the optometrist I went the following week and he was utterly confused.  We tried all the lenses in front of my eyes with the new sclerals in and nothing was making sense, hence my belief that the lab screwed up.  My doctor gave me my old pair back and told me to really compare them—and to not get them mixed up—and report back.  Well, I already knew that pair 2 was awful, but I was happy to get the old ones back.

Of course, I decided to play doctor in my room here at the motel.  Why not mix the pairs up, try different contacts in different eyes, and so forth?  Well, that’s just what I did, but I had to have charts to make sure I didn’t forget which lens was from which pair.  I also made notes, complete with diagrams of eyeballs as to not confuse things, to figure out the difference between each lens.

I realized a couple things: the left lens of pair 2 was total garbage.  While that is my worse eye due to another corneal opacity that my dumb, corneal specialist failed to diagnose and treat, I had horrible ghosting with that lens in, but not the left lens from pair 1.  So, I crossed that one off the list and put the left lens from pair 1 in.  Oh, I did try that lens in my right eye, but had no idea the sphere was different so don’t try that one at home.

Now, I had to figure out what to do about the right eye.  That lens from pair 2 seemed too strong, when it was actually weaker, and gave me headaches.  Nonetheless, I stuck that in my right eye, and mind you, these are plastic bowls filled with various solutions that are extremely difficult to insert as you have to be parallel with the floor, so I think I was at hour 3 at this point.  Well, lo and behold, the right lens from pair 2 didn’t give me an instant headache with the left lens from pair 1 in. As this is very confusing—you should have heard the conversation with my doctor—I’ll simple state that my right eye had the new prescription and my left eye had the old prescription.  Would I see better, worse, or the same?

I looked at the computer and the font was so crisp and black, but I still needed it blown-up, probably due to my convergence insufficiency.  The TV seemed crystal clear and the room looked okay with no ghosting.  Then, I went to the window and I could see very far and was able to read the signs across the street with ease, see clear images of the parked cars, and the leaves on a big tree were in detail.  I just had to wait to test out the mixed-pair of sclerals in a big box store and drive at night to be sure.

I did have to do errands within the next few days but got a ride due to the sun.  I noticed that in the big store, things were at about 90%, when they were at 100% before distance-wise.  I could see faces in detail, but not as well and not from a very far distance, and if I looked towards the end of an aisle, things were blurry and mildly ghosted.  It wasn’t bad, but the first pair was better for distance hands down. Everything else seemed fine and I didn’t see multiples of things on shelves.  I also could read the print on various items as long as it wasn’t too small.

Soon enough it got dark, and even though I wasn’t driving, my vision conked out again.  The illuminated street signs were very ghosted, as was anything else that was lit up.  I saw halos and had glare from the street lights and headlights of oncoming cars, but I figured this was due to my corneal opacities that cause images to further scatter.

I decided that mildly worse far vision in exchange for better near vision and normal, TV vision was a fair trade.  That would be the end of this story, except for that part about being contact lens intolerant.  I have severely dry eyes due to numerous conditions and someone like me can’t wear contact lenses for more than 10 minutes, or really at all.  The dryness is so painful that it can only be understood by sticking your eyes in front of a hairdryer non-stop.  I’ve tried every artificial tear, and due to the contacts, they can’t be too viscous or they muck up the lenses.  When I don’t wear the sclerals, I have lubricating ointment made of petroleum jelly and mineral oil in my eyes 24/7—what to do?

After seeing my doctor last week who agreed this was the best pair—fancy that—and that he couldn’t make my vision any better, as well as pointing out that irritating irony that I can only see with my sclerals, but am contact lens intolerant, he said he would research anything I could possibly use so that I can wear my sclerals every day and without issues.  I really do appreciate a doctor in this city who will research anything, but I’m not holding out hope.

So, presuming my optometrist won’t be able to find the miracle cure as no one else has, I’m still left in the keratoconus ghost yard, aside from the 2 days or so that I’m forced to leave and wear my sclerals while pouring vials of artificial tears into my eyes every 10 minutes and swearing I’m going to rip my eyeballs out.

And to think I had a chance of seeing again…

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  1. Terry says:

    This is a stressing situation and I find myself sitting here on the other side wishing the doctor would maybe have a meeting with other eye specialist. Maybe between them all an almost perfect answer can be seen. I wish there was something I could do. I can pray and I can be here for you. Hugs my friend

    • Hi Terry,

      I managed to write 2 posts this month (!!), so maybe I’m a blogger again! Thanks for swinging by, regardless. Well, you’re on the right track, but I saw my dry eye doc 2 weeks ago and he can’t come up with anything else, so I’m not hopeful. The dryness is akin to someone with Sjogren’s syndrome (an autoimmune disease that I tested negative for) and little can be done for that poor group, either. So, here I sit with ointment smeared in my eyes today… Sigh. :/

      Hugs (and thanks for being there), A

  2. ShimonZ says:

    Hoping that you will soon find a complete solution to your difficulties.

    • Thank you, Shimon! I think I’m a lost cause, again, but I do feel they’ll cure the tear-deficient crowd l-o-n-g before they ever figure out how to fix the faulty collagen in my body due to my genetic disease. So, I guess I have a shred of hope I may be able to see with my sclerals in my lifetime. Fact for you: even though my keratoconus was caused by my genetic disease, primary keratoconus (not caused by another disease) is more common in Israel (both Jews and Arabs) and a few other countries around the world. I have yet to see studies in the US/Canada, but they believe it’s all due to consanguinity and is genetic in some people. Well, yet a another reason to make aliyah if I weren’t too sick to deal with moving across the world, relearning the 99.9% of Hebrew I forgot, and so forth. 😀

      Take good care, A

  3. Hi A! Sorry it’s been so long since I’ve checked in, this summer was a hectic mess.
    You sound like you have an endless supply of eye related let downs and frustrations.:( I wish I could snap my fingers and make them disappear.
    Hugs xx

    • Hi Katie!

      I was MIA on WP, as well! I stopped blogging and am making a slow comeback I hope. It’s so hard with all we deal with! Well, I hope you’re hanging in there and thanks for your support, as always. I wish you could snap your fingers, but I think I’ll just have to sit here with goop in my eyes and hope science catches up. 🙂

      I promise to make the rounds on here to my blogging friends, but it’s been so hard with non-stop appointments and the CTD issues and 1 more month of useless appointments to go. Argh.

      Hugs! A

  4. Randall says:

    Thank you so much for you blog. I also have keratoconus and I know how it feels to have something so important as your sight slip through your fingers and not able to do anything about it. I do have a few questions and if you have mentioned them in your blog already I apologize for asking you to repeat yourself.
    Where did you get your CXL done?
    Did you pay for it yourself or did someone else (insurance or donations) pay for it?
    Have you had any other surgeries or plan to have any other surgeries to help correct your vision?

    • Hi Randall,

      Thanks so much for your comment and yes, keratoconus is quite the whirlwind. Mine is atypical as I got it from a genetic connective tissue disorder called EDS, so it didn’t show up at the typical age and just progressed like crazy within 2 years.

      To answer your questions:
      I should add this to my disclosure page, but I don’t reveal the names of any of my doctors on my blog–and I have a lot of them. While some are good and some are bad, we just live in such a litigious society that I keep everyone anonymous. I did state on here in a few posts that I traveled to LA for my CXL and I had epi-off CXL, as that is how it’s still done in Europe as epi-on CXL has not been proven effective.

      In the US, insurance will not cover CXL as it’s in clinical trials and not FDA approved. I believe approval is around the corner, but don’t hold me to that as things are so slow with the FDA. I have a link on my 1st post on how to find a clinical trial if you need that: From what I’ve seen, the cost for CXL (both eyes) is $5k-$10k and just depends on the doctor. I wish I had had a donation as I’m on disability, but I had to pay out-of-pocket. You can probably pay with a credit card if need be, as that’s what I had to do. I personally have an issue with docs charging for a clinical trial of any kind, especially since they get paid per patient, or eye in this case, so the extra charges are just padded on.

      Due to my EDS, which caused all the scarring and poor healing I had from CXL, plus my severely dry eyes, I am not a candidate for anything else, and all that really would be available are Intacs. I actually don’t have KC in one eye anymore as something strange happened, again probably due to my EDS, and that cornea is flat and has a central scar that is causing KC-type vision. Also, I would question any doctor that does CXL and Intacs at once. This is because roughly 2/3 of people get mild improvement in VA post-CXL and a handful get a lot of VA back, which occurred with me in the eye that didn’t go crazy (6 lines). In other words, you could have to get Intacs redone, so why not wait until the visual fluctuations from CXL clear up and then get Intacs if that seems like a good choice. For me, that is just out due to scarring issues. I also have seen some news about PRK surgery after CXL. Even if I didn’t have my issues, I wouldn’t do that because it hasn’t been studied and with KC, all laser vision correction is contraindicated. So, until they can prove PRK will not damage keratoconic corneas post-CXL, I will not be promoting it.

      I think that summed it up. Good luck to you and I do recommend epi-off CXL if you are still progressing. My experience was very atypical and it is a very safe procedure and everyone I’ve talked to online was just fine. Plus, this is as close to a cure as we have and if all goes well, transplants can be prevented. If you’re progressing slowly, you could ask your eye doc about waiting until CXL is FDA approved and then you’ll save a whole lot of money!

      Take care and thanks for dropping by,

  5. dyspatient says:

    Boy that was a work out for your eyes. And patience! I’m so impressed at your scientific method. I think I followed the various pairings but it does sound complicated. No one will ever say that you are not trying. Oh ok strike that, someone probably will because the world is full of idiots, but they’ll be wrong. And idiots.
    The analogy of a hairdryer sounds about right. Mine are not there yet thank god, but there are days when they feel like little sand balls I washed with bleach. This is a horrible catch 22 for you and I am sorry.

    • Aw, thanks. Yes, there was a method in my madness and I was a bit like a mad scientist (and went though 1/2 a bottle of saline solution). Lol! I still can’t get them in 1/2 the time, so I don’t think practice makes perfect. I also have to close my right eye to get the left lens in as that eye drifts to the left due to the convergence insufficiency when I get close to the mirror if both eyes are open. Ugh!

      Sorry you have some dry eye going on too. :/ In case you hadn’t heard, that is seen in EDS but this is just CRAZY: meibomitis/ocular rosacea, sicca syndome, dye eye syndrome (questionable), and then the post-op dryness that was the icing on the cake. Yes, it’s quite the Catch-22 and so irritating!!! I had to wear them today and was just dying and suctioned them out of my eyes right when I got back and squeezed a bunch of ointment in and ahhhhhh. Yep, you need a suction device for these suckers! Well, I am hopeful that they’ll figure out how to treat severe dry eye long before EDS. 🙂

  6. Randall says:

    Thanks you for the quick and thorough response. I do have alot more questions if you don’t mind if I ask them. Do you prefer I just ask you here or would you like me to email you somewhere else?

    • You’re welcome. I don’t have a public e-mail that works well for me, so the best spot is my blog (and your questions may help someone else). Also, I do have categories at the bottom of my blog, but I know my posts are not written like a medical book, so feel free to ask! I should be back on here Wed., but late.

      Take care…

  7. Hi A. 🙂
    I was hoping that all of this would get a little better in time. 😦 At least you have that amazing eye doctor who’s working with you – I’m happy about that and glad you have him. I bet you anything he enjoys having you as a patient because you’re so smart!!! Maybe some day the you of you will make some miracle happen? Wouldn’t that be great?
    On a last little note, I’m always amazed at how positive you remain with all of this. It’s almost as thought you’re on the outside – I think you would have been an amazing doctor (or researcher)!

    • Thanks Sheep!

      You are the biologist you know! Lol! My doc is THE best and he got the fit the 1st round and we just needed a tweak to the Rx due to my close-up issues (more the convergence insufficiency), but I presented with severely dry eyes so he knew this would be hit or miss. It’s odd as some people with Sjogren’s–which is how dry my eyes are–actually wear sclerals as they keeps the corneas moist (the saline filled vault), but for others, it just doesn’t work. So, he thought they may be a win-win based on that. My sicca syndrome, which has to be from EDS as it’s all autonomic dysfunction, is whats’s the HUGE issue ans just too much for the sclerals to control. As mentioned in other comments, I believe they’ll find the miracle cure for severe dry eye long before EDS. As you know, if it’s common (even if more mild) they will research it as money can be made.

      Do I sound positive? I think it’s more that I don’t expect anything anymore, so the let down is more tolerable. Always the cautious optimist, even if everyone tells me I’m a pessimist and soooo negative. I appreciate the compliments, regardless! I also wish I had had more of an interest in science like you! I liked biology and genetics–oh, that’s so funny–but I wasn’t passionate about it, so I went the liberal arts (BA) route and I loved history, culture, social justice, language and all the things that mean yow won’t find a job unless you become a professor. Haha.


  8. prysmatique says:

    A! Long time, no talk. So long that I forgot what your actual name is 😦 I’m so sorry, but what is it again? I just had my second CXL on Thursday past and though I’m all healed up again, I feel you on the dryness and the light sensitivity. My right eye is STILL really dry when I wake up from naps or in the morning and it’s 3 months post-op now. Sigh.

    Good luck with the scelerals darling ❤ It seems like at least some things are looking up for you. Like those glorious ten minutes of clarity. (I feel so frustrated without being able to use my RGP lenses since May now)

    Why don't normal RGP lenses work for you again? Or the ones that are piggybacked on soft ones, or the hybrid ones? Are intacs an option? Update me ❤

    xo Pryanka

    • Hey P,

      I just go by A, hence calling you P! Glad your 2nd surgery went well! Guess what? The PT I saw today has KC, too! Holy weird. Anyway, I’ve had severe dry eyes (like no tears) for a long time due to numerous conditions and then the CXL zapped any tear production I had left. We thought the sclerals might work as they have a vault and you fill them with saline solution, so your corneas stay wet for awhile, but the rest of my sclera, lids, etc. are so dry, I just can’t wear them unless forced to (around 2 x week). It’s super frustrating as I can’t see without them!!! So, that’s why I’m contact lens intolerant. Sigh… Hope they have a cure for severe dry eyes soon, but my dry eye doc and I have tried it all.

      Glad to hear from you and I’ll head over to your place once all my appts come to an end this week. My blogging keeps getting put on hold due to all the doctor appts. Argh.

      Hope your dryness goes away! If it’s not 24/7 and/or waking you up, I think it’s just a transient thing as that can happen from CXL.
      Hugs, A 🙂

    • Forgot to add that Intacs are out due to EDS (all the scarring) and more dryness issues. So, this is as good as it gets. 😦 Also, try a gel or lubricant ointment in your eye (in the eye drops section). It really helps with the dryness, but will make your vision worse so you can just use it when you sleep, etc. Good luck!

  9. coolperson1 says:

    Sorry you have had such an awful time…take care

  10. Great post! Been reading a lot about contact lenses. Thanks for the info here!

    • You’re welcome. Thanks for dropping by…

      • Stephanie says:

        i I know it has been a long time since your last blog, but I came across this blog and thought I would share my experience. I had lasik done about 4 months ago (HUGE MISTAKE) I now have ghosting, triple vision 20/60 to 20/80 in my right eye, I can’t focus on fine details and have severe dry eye with chronic blepharitis. I was in so much pain and using drops like every 10 min before I read someone’s blog and convinced my doc into lacriserts I had to fight and beg for them to prescribe them, but they have made my days atleast tolerable and I am now down to using drops (with some yawning to make them tear) every hour or two and the burning is not nearly as bad as it was. I really feel for you because I was in the most awful place in my life due to this not knowing whether I could tolerate another day LITERALLY. I am so sorry that you have to experience such a horrible thing. I noticed you never mentioned them and thought maybe it might help. I cut mine in half and in about 8 hours I take that one out and put in a new one bc they start to make your vision blurry when they start to dissolve away. It took time to adjust to them. I also find it more helpful to place them more towards the center of my lid and when I let go of my lid I cup them down into my lids by pulling the lid out and over it (as it is in my lower crease) you do have to water them for the first ten minutes or so and I frequently after that. It’s really worth a try atleast give it a week or two of use before ruling out. It made a HUGE difference!

      • Hi Stephanie,

        I’m really sorry about what happened due to LASIK surgery and have heard similar stories, unfortunately. People can get a disease similar to keratoconus called post-LASIK corneal ectasia, so I think the benefit doesn’t outweigh the risk and wish doctors didn’t act like LASIK is such an easy and risk-free procedure (not that I am a candidate for it). Sigh.

        Also, thanks for sharing your post-LASIK dry-eye story and how Lacriserts helped you. I did look into them several years ago but none of my doctors were big fans of them–or hadn’t had great success with them–and since I have to wear my scleral lenses in order to drive (I have no other choice), they wouldn’t work for me unfortunately. Before the scleral lenses, another doctor was worried I would literally poke myself in the eye while inserting them due to my low vision. :/ However, I do think people with severe dry eye that don’t have to wear something like scleral lenses–talk about a contraindication–should give everything a try. I’m really glad they helped you! I’ve been dealing with severe dry eye since 2006 due to something called sicca syndrome and then my medication stopped helping and I now have zero tear production from corneal surgery to save the vision I have left, or rather the medication doesn’t make a dent in that. That’s quite a trade-off and isn’t even a known risk with my surgery. Ugh! Anyway, I do know how painful it is and really feel for all you’ve been through.

        Thanks for stopping by and best of luck going forward,
        A 🙂

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