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I had near-perfect vision less than 2 years ago.  It was somewhere close to 20/20, aside from some mild myopia, or nearsightedness, that I had developed in my early 20s and did not even wear glasses for.

Then, the keratoconus (KC) developed and went wild and you can read my blog for that saga.  I was at my corneal specialist’s recently as he wanted to see me for a 6 week follow-up after discovering central corneal opacity, or scarring, in my right eye months after my bilateral cross-linking (CXL) surgery.

Despite what I have felt has been rather negligent care, I got the full workup at the appointment: reading 2 eye charts, a refraction, a corneal topography, a corneal pachymetry, a check of my ocular pressure, and who knows what else I forgot.  I was in a bad mood due to the disorganized clinic and was not really sure why I needed all the tests when I just had them done, but asked if I could at least have a copy of my topographies since nothing was initially sent to my CXL surgeon in L.A. for the clinical trial.

The techs are nice and had no problem with my request of having 4 papers copied, as opposed to the last time when I asked the front desk girl, who said she would have to charge me.  Now, I finally had the scans I needed to see what my corneas and KC really look like at this stage, although my surgeon confirmed the other week that per my scans, the CXL was successful in both eyes and the progression of KC has been stopped in its tracks.  Thank the Lord for modern medicine.

After all the testing and finally seeing what I could of those scans myself, the doctor rushed in talking a million miles a minute.  He never seems to remember who I am or what my post-op issues are, which is really frustrating.  He asked if I had any improvement since I had last seen him and I replied that I had some intermittent watering in my left eye—possibly due to the Restasis starting to work after 5 months—and that my right eye with the scarring had the same vision, which is a good sign, as well as the fact that the horrid light sensitivity (sun burning my retinas) was better, but not gone. He did a quick check of my eyes and said, “Good.  Good.” That told me nothing, per usual, so I began with the questions that he hates, as he is already making notes in my chart at this point.

Here we go with the issues to preface all this.  I read 2 eye charts—from right to left my visual acuity (VA) is now 20/40, 20/40 on one chart and 20/30, 20/40 on another.  My left eye had gone up to 20/60 at my last appointment, so I was dealing with a post-op fluctuation that has cleared up.  To err on the side of caution, I will say my vision is 20/40 with great difficulty on those last 2 lines, as no one has had me read the charts with both eyes, or binocular vision, which often gives a better VA.  Would my true visual acuity not be of importance post-CXL?  Well, of course, but I am dealing with sub par healthcare here.  However, the big question is: why can I not see?

I should add that I do have a bizarre zone where I can see somewhat normally—it seems to start 1 foot in front of me and stop at 4 feet or so and there can be no sunlight or bright, artificial lights or the whiteout sets in.  This is the safe zone and aside from a plasma-type TV on a not-too-far wall, I get staggered vision of everything outside that space in small rooms.  For a description of how I see outside, in big spaces, and in the world in general—also known as the Ghosted Mess—refer to this post.

I have to ease my way into questions or my doctor gets irritated and the appointment ends, so I started with the basics.  I wanted to know if the Restasis was causing the intermittent watering in my left eye, or if that was just from my corneas finally starting to heal from the surgery, as Ehlers-Danlos syndrome (EDS) is causing very poor and slow wound healing.  The doctor could not answer that one. He kept saying my eyes were dry due to my meibomitis (MGD), which causes a lack of lipid (oil) layer in the tears, and that I just need more IPLs.  I told him I had my last IPL 2 months ago and his associate—the doctor I like who specializes in dry eye—said more IPLs would do nothing at that point and I would not need a touch up for possibly a year.

I had 5 IPLs with no improvement that I noticed.  However, the doctor thought they were successful in terms of the meibomitis, but as my eyes stopped producing the water layer in my tears post-op, they were still dry as a bone.  Yes, this is all confusing, but for more information on MGD, as well as post-op dry eye, refer to this post.  The corneal specialist gives me an odd look every time I explain that my complaints are related to my lack of a water layer and he says that I could barely open my eyes due to the meibomitis before the IPLs—although I only saw him once since 2010 and never had that symptom so I think he has me confused with another patient. Can I just see the dry eye specialist instead?

That leads to the big question—if my vision is roughly 20/40, why am I visually impaired?  20/40 vision is legal to drive in most, if not all, of the U.S. and I am not too sure I should even be on the road late at night, let alone left to wander in a big box store, which I would like to peruse with a stiff drink to offset the anxiety from the chaotic mess.  Why do people look like shapes and colors and nothing more, unless they are in my safe zone?  Well, the doctor is not sure, of course. What is he sure of?  Why is he a doctor?  Why is he the best corneal specialist in this horrid city?  I may have better luck getting answers from the local fortune teller, who happens to be in the jenky strip mall next to my motel.

Now, I am not an ophthalmologist, but I am quite capable of interpreting my scans.  Per the topographies, my better eye pre-op has no evidence of KC now in either the scan—showing no corneal steepening and 0% severity—or the K-readings, which are in the normal range now.  My worse eye pre-op decreased in severity by 32.5%, although my K-readings are relatively the same in that eye, thus showing keratoconus—although it will not progress further due to CXL.  K-readings measure the curvature of the cornea and there is still a significant steepening, which I can also see in the color-coded scan, but it appears to be much less severe, which makes no sense, especially since I got 6 or 7 lines of vision back in that eye.  Both topographies do look quite different from my pre-CXL ones, which is rather fascinating. So, it would appear that I would have no keratoconic vision in my better eye, yet there is from my vantage point and I do not have my old 20/20 vision, regardless.  May I also point out that at my last appointment, my doctor could not even tell me if the CXL had worked in that eye.  Can I please move to L.A. with a giant dehumidifier and go see my surgeon for follow-ups instead? As mentioned, even I could interpret that scan with my impaired vision!

Back to the question at hand—my doctor asked when I would be seeing my surgeon again, as he seems to think I am able to go to L.A. at the drop of a hat—even though I would need an all day ride, have to pay a huge cash sum to see my doctor, and rent a motel room there, while living in one here. I reiterated for the 100th time that I have not seen him since my surgery in September of last year due to X, Y, and Z—not to mention that my local doctor referred me there and said he would handle all my follow ups.  My patience was wearing thin.

Then, he asked how soon I could have laser vision correction surgery done there, even though that is my local doctor’s specialty (hence, corneal specialist).  Is he crazy?  I am 7 months post-op and a poorly healing, scarred mess due to my EDS and he thinks laser vision correction—namely PRK, which to my knowledge is still being studied for safety in post-CXL eyes (please fact check that), is a good idea? Due to the weak collagen structure in keratoconic corneas prior to the development of CXL, laser vision correction is contraindicated and is why all laser vision correction patients are given a topography to look for any evidence of KC before LASIK or PRK surgery.  My eyes are so dangerously dry, plus the central corneal opacity that is no worse 6 weeks later but has not resolved, and he is even considering this? Furthermore, upon researching this issue just for the hell of it, the only scholarly, research articles regarding PRK following cross-linking involve or reference this ophthalmologist in Greece, who is on the payroll:

Financial Disclosures: Dr. Kanellopoulos is a consultant for Alcon, Inc., maker of the Wavelight excimer laser that he uses for topography-guided photorefractive keratectomy [PRK].

Article Source: http://www.aao.org/isrs/resources/outlook/11/01_11_feat.cfm

Maybe it is best to just see the local shaman wandering in the desert at this point.  Perhaps some native shrub, like tumbleweed, can fix my vision—or is the local shaman in on the hustle to further destroy my corneas for some exorbitant fee, as well?

I told my doctor—who I now have absolutely no trust in—that there was no way I would go through surgery again with all the complications I have had and he mentioned something about my vision being bad from astigmatism.  What astigmatism?  Irregular astigmatism aka keratoconus?  9 months before my diagnosis, the optometrist I saw had misdiagnosed my keratoconus as mild astigmatism in my worse eye.  Was this something new that my doctor pulled from the refraction done that day that I was not given a copy of?  Add it to the list of copies I will be paying for very soon.

So, aside from residual keratoconic vision and little improvement in my K-readings in my worse eye, which I still don’t understand if the cone is so much flatter per the topography, is massive astigmatism in both eyes—the normal kind—contributing to the significant visual impairment now? If so, why can I not see any better with a refraction, just like when I had one before my diagnosis.  I just answer, “Same” every time they flip the lens and ask, “Which is better—1 or 2?” Is the KC cancelling out any hope of lenses correcting the astigmatism?  Why can I not get correction in my now non-keratoconic eye like my brother who has astigmatism and gets by fine with glasses?  I am so utterly confused and Dr. Corneal Specialist is of no help.

As I have no choice but to wait and hope my vision improves a little more as my corneas continue to heal, patience has now been added to the survival box, and while I twiddle my thumbs, I will keep crunching the numbers in attempts to resolve the elusive mathematical equation involving my VA: 20/40 = X.

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16 thoughts on “20/40 = VISUALLY IMPAIRED?

  1. Dawn says:

    A, sounds like you have the most frustrating healthcare system there! Hope your vision improves very soon and if not you should get good vision with lenses. Take care D

  2. Hey D,

    It’s so beyond frustrating! While our insurance system that sets the time limits is a huge factor, I place the blame on this physician and whoever is running his office, My CXL surgeon (in LA) is great and I even have his e-mail, but he is a world-renowned KC specialist and I don’t see why I should have to e-mail him every question! Even his asst. (who I love) apologized that I was stuck here dealing with this doctor.

    My plan is to try to get the scleral lenses one day, as they are often used by patients with very dry eyes like mine w/o vision problems (so, my only hope). However, my hardened corneas post-CXL are taking a very long time to stabilize/settle on a shape and as you know, the fit has to be spot on. My surgeon told me if I did get vision improvement that the studies show it will slowly continue to get better and they think for a life time–does that mean new sclerals every month? They run around $7k (I read) w/o insurance and I have vision ins. now, but not sure about the future. Then my VA keeps changing, so can’t take any chances–hence, honing my math skills. I mean, does this make any sense? I know your VA–was there before, and while things are better, this still feels a lot like my old 20/100 w/o correction due to the dryness issue. I had to drive in the daylight today into the night (now not much better) and swear I finally had hypertension! Lol!

    Talk soon!
    A 🙂

  3. dyspatient says:

    Absurd that you need separate insurance for this. A friend of mine went through the same thing with her jaw. TMJ wasn’t even close. The joint was crumbling and the dental insurance said it was a medical issue, and the medical insurance said it was a dental issue, and that was just to image it! So I shouldn’t be shocked that you need “vision” insurance to cover any aspect of your clearly medically related eye care, but I am nonetheless. It’s shameful!

    • Hey other D,

      You lost me! Do you mean what I wrote in the comment about the scleral lenses that other D has? Yes, that is frikkin’ vision insurance and you need the 5-star plan so they cover (in part) what are called medically necessary contact lenses (note medically), which are mainly used by the KC crowd, but those w/other conditions, too. The price is ridiculous due to all the fittings–sometimes they need a mold of your eye ball done for sclerals, etc. Not the contacts from WalMart here. Ha! Then there’s a trial pair, refittings, yada, yada. Then you pray your vision doesn’t change, which it does w/o CXL for the worse, but still does (for the better) w/people like me who got improvement. It’s an OY VEY. They can grind them out if you get worse but if you get better, I think you need new ones, which is recommended every 3 yrs. So, this will be my life from here on out. Maybe I should run a poor me ad in Craigslist or something. Oh, those refractions at my clinic are cash as they don’t take my vision insurance, only my medical. Can you see why I just lose it in my posts?

      I get your friend’s ordeal. I have horrid TMJ (more the huge knots in my jaw) and need a new night guard as mine looks like it went through the garbage disposable courtesy of my grinding into it and it has a hairline crack. I called one of these TMJ dentists and it’s $2,500 cash for just a night guard–and the guy said it goes up from there. These are some super custom things and they use TENS units to see which muscles you activate. Sounds nice if I WERE RICH! So, it’s the crappy ones from the untrained dentists via dental insurance (still a few Benjamins) or nothing! Oh, the joys of being American. About to be on the next El Al flight to Haifa. Another fav. movie line!

      A 🙂

      • dyspatient says:

        Yes, I was commenting on your comment. 🙂

      • Got it–figured that was the reference. All ridiculous (hence, Horrible Healthcare), like the fact that I’m still up, but was stuck down in the lobby all night as the frikkin’ power went out and about died sitting in a pitch black, hot (it’s reaching near 100 F now), motel room!!! Got back in here around 6 am. Between the power outages and the fire alarms going off (and the shoot-out/fire last time around), my cat and I will be losing our minds soon… Lol! Well, hoping to go to bed before noon tonight/today–OMG. Hope you’re feeling a little better today… 🙂

  4. nmbrsrgr8 says:

    You have a wonderful blog that I love to read!

    I have nominated you for the Versatile Blogger Award. You can find more about the award at the following site.


  5. Hi!

    Thank you so much for the compliment and the nomination. Unfortunately, I was nominated for another award in the past and they all have the catch of nominating X number of people and I just keep a small circle here on WP. I appreciate the sentiment, nonetheless, and if I ever find X amount of people I like, I’ll take up the nomination (and the Liebster Award from months ago!). I enjoy your blog and like learning how others with chronic ailments survive this all, so the feeling is mutual!

    Will visit again this weekend when my body is better from the weekly round of Dr. appts. Sigh…

    Take care and thanks again!
    A 🙂

  6. dyspatient says:

    Wow, stuck in the lobby with no AC – awful! I hope you had ice packs!

    • Lol! The lobby was cold as the sliding doors were stuck in the open position and it was cool out. I keep my room at 83 F (that’s the A/C) as I’m always cold and the windows open less than 1/2′ due to the locks, so the room was getting hot and steamy (very humid in the place–odd?) and pitch black, as mentioned. Cat was perfectly happy–she likes to be outside when it’s close to 120 F… haha. Cats. So, lobby was OK and had some emergency lighting–about died trying to get downstairs in the barely lit stairwell (not to mention just freaky @ 4 am). Really needed good vision at that time. Sigh… This week has just been the icing on that cake.

      • dyspatient says:

        It sounds surreal.

        Also, I think you need a headlamp.

      • Lol! I have no idea how I got HERE. HERE in the broadest sense possible. Yeah, I need a headlamp like a miner. Maybe I’ll find some pennies on the ground (like when I get lucky in the laundry room). I have a candle in here but had to feel around for the lighter in the drawer. Life saver! It’s getting better, though. I found out today that my PT is about to cut out as I only get so many visits per year or something. Maybe I can check into one of those rehab centers. Maybe we all should so they take EDS seriously. I mean, I do have a degenerating shoulder (would they prefer to pay for risky, rotator cuff tendon replacement surgery on a Type II who doesn’t suture well?) and the rest of it when my other issues get worse sans PT? I worked so hard in PT (a yr now, minus time off for surgery). I’ve been wanting to trash my 300 sf room all day. Hate it!!! This is when I can’t write–H.H. (Horrible Healthcare).

  7. prysmatique says:

    That healthcare provider of yours sounds TERRIBLE 😦 Some corneal specialist he is…
    Are there any other doctors you can see in your area that might work out better for you? Do you see 20/40 (Supposedly) without any glasses or contacts on btw? And you’ve still got all the kerataconus symptoms and such, right? IT IS SO FRUSTRATING – I just had my CXL on Friday as you read on my blog, but I went in today and my vision with squinting is still only about 20/70 or so. The problem is that now I don’t know how poor my vision was pre-op so I’m not sure what effect this has had on my VA, if any. I guess only time will tell.

    What drops did your surgeon prescribe you after the cross-linking btw? I am taking this milky anti-inflammatory drop called Pred Forte that will help prevent scarring post-op. And for your dry eyes…what artificial tears were you using post-op? I have heard that we should only use preservative-free ones while the eye is healing.

    PS the fact that your doctor recommended PRK is so ridiculous I can’t even….

  8. Hey P (had to give you a nickname!),

    Yes, my corneal specialist is my nemesis. It’s like I have to fight for treatment! Ugh! I live out in the desert (keep my city under wraps just in case) and we have horrid healthcare here in general (I’m from a normal city with normal doctors!). My surgeon in LA is one of the best, but the local doc was supposed to do all the trial follow-ups and he can’t even deal with complications!

    I was on Pred Forte, as well (4 x day per eye). I was also on an antibiotic. I already had dry eyes so was up a creek there but just kept dousing my eyes w/Thera Tears Liquid Gel (drops in vials–no preservatives). Then I stopped producing tears like with LASIK and have been using a lubricating ointment 24/7, which is great for my vision. I’m super sensitive to steroids–not all are–and got systemic side-effects and then my hair started falling out 2-mos post-op. This doesn’t always happen, so don’t freak! Plus, you look like you have a lot of hair like me–mine is just super dry and a super ‘fro now (wasn’t great before). I was told the steroids were to prevent hazing, and the hazing did go away after about 2 weeks–yay! I stopped the Pred Forte at 3 weeks or so due to the side-effects after my surgeon said it was OK. By my 6-mo follow-up, I had developed a scar (central corneal opacity–in the Sniffing Glue post). So, it showed up between month 3 and 6. I forced the doc to treat it with Lotemax (another steroid as I found a journal article that used that post-CXL for scarring–in the Art of Kvetching post. Yes, strange names!). That steroid left me with flaky brows and then a flaky face and someone else on WP I spoke with got that side-effect. Weird! Anyway, it didn’t get rid of the scar, but it hasn’t gotten any bigger and is not blocking my vision. Phew! This is a RARE side effect and my EDS causes scarring issues, so may be from that (I don’t produce/synthesize collagen correctly). Scarring is rather common with CXL in eyes with advanced KC, which it sounds like you don’t have (plus, they don’t do CXL on these people anymore due to all the issues, however, the fact that the scar showed up in my worse eye makes sense).

    On to the vision. Glasses don’t work at my stage and I’m contact lens intolerant–so I just see with my crazy eyes. I have an explanation to that in my latest post–I know, you need 4 mos. to read my posts, but I do follow-up on things! Lol! Btw, they record your VA (and if you wore contacts–your VA with them in) pre-op. It’s needed for the trial so just ask or pay for the copy. I got the big improvement in VA in my bad eye soon after my epithelium healed, but this was not normal, either. Well, I could read the 20/40 line, but my vision was much worse than now and I had those starbursts around lights for months. Also, light sensitivity/glare is a huge issue I never had before. So, as discussed in my latest post (you have to get through some other stuff), there is an answer to the 20/40 thing. That test, per my dry eye doc who I love, is given under ideal circumstances and doesn’t represent how we see in the world–especially with KC. For ex., I used to see 3 lines of letters, so I could guess a bit as some lines (the ghost lines) were clearer than others. That doesn’t help in real life when you see 3 images of the same car in front of you. Trust me that i would never pass the DMV test and I still have ghosting, fading, and a lot of drag on the VA test. Per the trial, you should get a refraction at your 6-mo follow-up (if not sooner for contacts) and that is the most accurate as far as what your vision is really like. For example, my bad eye (that reads 20/30 at times, so now my better eye) has 2 diopters less of myopia and I think nearly 1 diopter less of astigmatism. So, even with the explanation in the Coconut post, I’m still rather lost. I feel like I see at least 20/70–everything is a ghosted mess outdoors/in big spaces like stores and close-up is just as bad. Only good news is I see an optom. about scleral contact lenses next week, as these can work for dry eye/KC patients who are left contact lens intolerant like me.

    You might want to get color copies of your future topographies (and the one right before your CXL to compare) as it is rather interesting. It’s easy to interpret the basics on there and they have your K-reading, which measures the corneal curvature. I have lower K-readings in both eyes post-op, so less steepening of my corneas. My better eye shows no evidence of KC now, but that eye has worse VA. Odd? Going in circles here!

    Long reply, but feel free to ask anything. No CXL question is too weird as I was in the weird group with my busy, LA surgeon (he said, “I’ve seen a handful of patients like you before.”). The weirdo KC patient! Well, at least I have already been sick for 12 yrs so it was just one more thing to add to the plate. Not getting a diagnosis for 9 mos, which would have saved A LOT of my VA, is where I really lose it and then throw things across the room… Haha. Don’t get me started on the doc and his PRK idea! Omg! He’s the best in this city, too–ugh.

    Hang in there…
    A 🙂

  9. azmaneyecare says:

    Sorry to hear how much you have gone thru. You may want to try and find a doc on the west coast who specializes with Scleral lenses.


    • Thank you for the comment, like, and follow. I appreciate your comment and read your posts via the reader or on keratoconusGB. I live in the SW (not from here!) and the healthcare is deplorable. I actually have an appt. to see one of the few optoms. here who deals with scleral lenses very soon. We are thinking the same! I’ve been waiting as my corneal doc can’t decide if I’m stable–even though I had bilateral CXL (in LA) 9 mos ago! The only problem is that I have severe meibomitis/ocular rosacea, which may prevent me from getting them (or if insurance won’t cover). So, my GREAT dry eye doc–amazing he moved here–thinks I am probably OK as I’ve had 6 IPLs and he’s doing another new treatment that he came up with to keep the meibomitis at bay for awhile. It’s up to the optom. to decide–and hopefully be honest–as to whether the sclerals will work for me with my irritated eyes/lids. Well, I have no ability to travel and am out of money, but would love to come to your clinic if I were closer for quality care and b/c I also have Ehlers-Danlos (I figured that out after my CXL and mentioned it to my surgeon who said to look into it) and Baltimore is where all the EDS specialists are due to Johns Hopkins. Well, in my next life. Thanks again and take care!

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