Tag Archives: KC


Image Source: http://www.thesun.co.uk

I don’t like to fly.  I get extreme anxiety and have had full-blown panic attacks at every elevation imaginable, even after taking a fear of flying course nearly 20 years ago.  So, when I went to see my optometrist a couple of weeks ago to find out why my vision was worse and more ghosted in my right eye, I had that fear-of-flying feeling the whole time: being completely out of control and waiting to crash and burn at any second. After all, if I’m not holding that plane up, then who is?

As usual, an assistant had me read the Snellen chart—a useless tool for assessing the visual acuity (VA) in anyone with keratoconus (KC).  I just wanted to know how much my VA had changed in my right eye.  Well, this woman didn’t want to tell me, but I do know that the VA in my left eye was unchanged because I turned around and read it on the wall when she walked out and saw 20/60 written next to the letters. I couldn’t see that while staring straight at it in the mirror. Again, the Snellen chart is worthless and there is no way I really have 20/60 vision in my formerly better eye pre-op and then formerly worse eye post-op.  I didn’t get near that line with my right eye, so I believe I lost around 4 lines of vision over a month in that eye.  I’m sure that sounds impossible, but I was progressing so quickly pre-op that it really is possible.  I had that awful feeling of sitting in a plane knowing we would be taking off very shortly.

Next, I had to have the dreaded corneal topography done, as that is the gold standard for diagnosing and tracking KC.  I looked into the machine and stared at a tiny hot air balloon that I saw multiples of with each eye while a photo was taken. My fate was sealed, just like when they close the door to the plane.

We headed back to the exam room and I waited for my doctor with my heart pounding.  What did the topography show? Was I progressing 13 months after collagen cross-linking (CXL)? Why doesn’t anyone research people who get keratoconus from Ehlers-Danlos syndrome?

My doctor came in and he knew why I was there as we had spoken on the phone, which is a rarity in the States.  He looked over a few things on the computer and then my topographies came up, but I couldn’t see them in detail.  I think he spent 20 seconds comparing them to my previous ones from this June, but it felt like 20 minutes and I could hear those huge, jet engines starting up: the clear sign of impending doom.

Finally, he spoke and said that there was no difference between my topographies.  I actually cried right there in the exam room out of relief, which is how I feel when a plane firmly touches down on the runway.  I was horribly embarrassed and it only lasted 5 seconds and I wiped my eyes and apologized. But, what was wrong with my eye?

My doctor checked my eyes and looked to see if the slight scar I have in the right eye was worse, but it wasn’t.  Another thing that can initially cause ghosted vision is a cataract, which may be a side-effect of CXL due to the UV light, but my lens was clear.  He thought everything else looked normal in both eyes, aside from the scar partially blocking my vision in my left eye from CXL.

He decided to do a refraction and apparently my prescription has totally changed since I saw him a few months ago, but not for the worse.  I’m still confused on what that means exactly, but that is precisely what he told me and I wish I had gotten copies of my refractions, but you have to pay for records.  I can still drive with my scleral contact lenses, but either due to the sun or the lights at night it’s really hard.  As I rarely wear them due to the pain, I noticed that my vision had gotten worse without my lenses in, which is the bulk of the time.

I told my doctor again my concerns about CXL lasting due to Ehlers-Danlos.  He told me that he had no idea about that or what was wrong and that I had surgery that totally effed up my eyes—that would be both eyes due to the prescription change and yes, I cleaned up his language.  What did he mean by “effed up my eyes?”  I believe he was referring to the fact that my corneas are changed at the molecular level, not truly effed up, but maybe a casual relationship with a doctor isn’t as great as I thought.  He said that maybe my left eye had gotten better, but I’d been doing the cover-one-eye-and-then-the-other test for weeks and just looked at him like he was yet another inept doctor in this city.  The free fall was starting.

I can’t even read on my hugely blown-up laptop with my right eye, so that is the one that is worse.  That was my better eye 6 weeks ago and I was also right eye dominant due to that, so my visual acuity was based on that eye which used to read the 20/40 line with great difficulty, but previously read 20/100 pre-CXL.  I am now left eye dominant as my brain is trying to compensate for the vision loss in my right eye.  Do I need to have fancy initials after my name to figure that out?

Again, the Snellen-based VA means nothing with KC as you can get a driver’s license with 20/40 vision and I flunked the test almost 2 years ago when the KC was starting in my left eye and I could read 20/30 from that eye without correction. I got a license as I could get enough correction with glasses in my better eye to read it back then, but I have a huge restriction stating that I am blind in my right eye, which was at 20/60 at that time: my current VA.  Legally blind is defined as 20/200 in the States; I rest my case on the idiotic Snellen chart.

So, my optometrist doesn’t know what is wrong or if the CXL will continue to halt the progression of keratoconus.  Oh, he called it keratoconus three times so I’m going back to that. A Google search for “secondary corneal ectasia from Ehlers-Danlos syndrome” yields zero results, unless my posts come up, so keratoconus it is.  Many disorders are associated with KC and until the medical world catches up and comes up with new names, I’m staying in the KC club. My topographies give a diagnosis of keratoconus and the big specialist who did my CXL had no clue I had Ehlers-Danlos syndrome, although I did mention the fact that I thought I might have it and he told me to see a geneticist.  If the only real difference is the typical age of onset and the lack of disease burn-out, I’m sticking with keratoconus and not changing my tag line.

What is wrong with my eyes again?  My vision is a bit better today so I wrote this post.  Who effing knows?  The plane crashed and there are no survivors.  I’ll post an update when they recover the black boxes.

Where all the answers are.

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Photo Source: http://www.ennovation.com

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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Some matters call for drastic measures.  They require you to reach deep into your bag o’ tricks to find a resolution.  For me, this is where being a kvetch, or a kvetcher, comes in handy.

For those not familiar, a kvetch is a complainer and kvetching is what a kvetch is always doing, although a kvetch can also kvetch, so it is both a noun and a verb.  A kvetch also kvetches, which makes this even more confusing.  Allow me to provide a quick lesson through some personal examples.

My father is always kvetching; he kvetches if his Diet Coke doesn’t come with a lemon wedge.

Don’t kvetch so much!  I have something even worse to kvetch about.

Why is my grandmother such a kvetch?  She’s the biggest kvetcher I know and doesn’t have a care in the world.

As the Yiddish spoken in America became Anglicized over the last century and the majority of American Yiddish-speakers of yesteryear have passed on, it’s all taken with a grain of kosher salt.  Fancy Schmancy was not a phrase used in the old country, after all.

Nonetheless, the term kvetch is used in a derogatory sense and is generally reserved for those types who chronically complain about everything in a very drawn-out way.  At the right time, however, I put on the kvetch hat and make the most of it. You must kvetch with an end goal in mind, or else you might as well be a plain old complainer.  Kvetching is an art and one must know when and how to use this craft.

I had to pull out the kvetch hat quite recently in order to remedy a problem.  Refer to my last post for the whole saga, but in short, my corneal specialist just left me hanging over a week ago with a diagnosis of central corneal opacity in one eye, a type of corneal scarring that can lead to blindness and is a rare complication of cross-linking (CXL), which I had done 6 months ago for my keratoconus.  He told me I had to go back to L.A. to see my CXL surgeon, which isn’t possible, and that was that.

I have been self-treating my eye with 2 prescription drops I had on hand since the Friday I was diagnosed with the opacity and was awaiting a response from my CXL surgeon, which I got in due time via e-mail.  He told me that it didn’t seem that serious—as opposed to my local doctor, the corneal specialist, who told me I could lose my vision in a few weeks.  He mentioned that he would be happy to see me, regardless.  That got me nowhere since traveling to L.A. was out of the picture.  Who was I to believe?  I had to save my eye, so it was time to start kvetching, but to whom?  This is not a solo sport.

Well, I got a second chance due to my local doctor’s assistant not reminding him at my appointment—despite reminding her—that this was my 6 month follow up for the FDA clinical trial and I would need the appropriate paperwork filled out and various tests done.  My doctor didn’t do anything required by the FDA, so I was rescheduled to see the optometrist who works with the surgical patients this past Friday.  That was just what I needed.  A chance to perform the art of kvetching in all its finery.

In the meantime, I called the clinic the Monday following my disastrous appointment and left word for my doctor that I had contacted and heard back from my CXL surgeon, wanted to be treated with an ocular steroid and antibiotic and have a follow up in 6 weeks, and to have him call me back in regards to this.  No call.  I called again on Thursday afternoon and asked why he had not called back.  The rude receptionist who answered told me, “Your message was very lengthy and he did get the message.”  Perhaps he could get e-mail like my very busy CXL surgeon?  Regardless, her response told me nothing other than that I was still left hanging and he wasn’t going to treat me.  I let her know that I couldn’t go to L.A., he was my treating physician, and that I expected a call back in a not-so-nice-tone to mimic hers.  This was more of a stern kvetch, kvetch, kvetch.

I got a voicemail from my doctor Friday morning, which was the next day, saying I needed to make sure to come in for my appointment with the optometrist that day, as well as a voicemail from the rude receptionist reiterating what he said and that my doctor would see me at the appointment, also. Maybe the kvetching was paying off?  I called her back and told her that I’ve never missed an appointment and asked why these messages were being left, just to kvetch some more for kvetching’s sake.  This was really just to add extra emphasis and be a pain in the ass, or more accurately, a pain in the tuchus.

I am always running almost-on-time due to my mess of a body from Ehlers-Danlos that is like the Tin Man from The Wizard of Oz, but I managed to print out the journal article written by my CXL surgeon with the case report and treatment protocol I was following for post-CXL central corneal opacity and also had a copy of his message from the e-mail in hand for the appointment.  All bases covered.  One must do this to be an effective kvetcher—kvetch in an informed manner and keep your eye on the goal.

I had been in a pissed off mood for a week due to this ordeal, so when the cheery front desk girl asked how I was doing when I checked-in, I didn’t give a nice response.  Why lie?  It was more of a kvetchy, I’d-be-better-if-my-doctor-gave-a-crap response, but she continued to act in an odd, overly nice way that I don’t normally see there.  I took a mental note of that.

Luckily, one of the better techs called me back for the various tests I had to do and I started kvetching to him about my treatment there—or lack thereof—since he sees me often and is aware I am never like this at the clinic.  I even told him, while he was making notes in my chart, that I was on the two new drops in one eye and was treating myself due to my doctor not willing to do so.  Oy vey.  Would he warn my doctor that a kvetch was in the clinic?  I was betting on it.

The tech and I went into a little room to do the corneal topography and I felt someone rubbing my back.  What the heck?  I turned around and it was the front desk woman I normally deal with and know fairly well, so something was definitely going on.  She had the sorry-you’re-dealing-with-this look, which wasn’t necessary, but gave me some reassurance that a resolution might be coming. How did she know?

Had the rude receptionist spread the word that I was a hugely dissatisfied, kvetching patient who could possibly be a yenta—a gossipy woman—and ruin my doctor’s reputation in this big-small-town in the Southwest? Did the 99.5% Latino, but primarily Latina, support staff have a hidden knowledge of Yiddish and its deeper meaning?  Had they been throwing these words around all week in between English, Spanish, and Spanglish?

“Esa mujer que always está kvetching.  Oy, I’m gonna go loca.”

All the better for me.  Relax, I speak Spanish, was an expat in México, and love that America is a melting pot of cultures. Thanks to the Spanyidglish, the kvetching was definitely paying off.

From there, I was led to another room and told to wait for the optometrist.  I planned on kvetching to him about the predicament I was in and asking for his advice while throwing my hands up in the air, rather than just shoving it down his throat.  Again, there is an art to this all.

However, just as I sat down, my corneal specialist came in.  I wasn’t expecting him yet, so I quickly prepared myself.  I noticed he was more humble than usual and had a nicer demeanor, as his mood is unpredictable.  Had he prepared himself, as well?  I believe the yentas in the office had warned him about me, as well as the tech.  I did kvetch about my predicament to an extent, but I was armed with the medical journal article and the e-mail message, all from my CXL surgeon.  Perhaps this would finally be resolved.  One must know precisely when to take the kvetch hat off, of course.

The optometrist quickly came in and now both doctors were tackling the opacity issue together and taking turns peering into my eye and talking in hushed tones.  The optometrist could see the opacity but thought it wasn’t that worrisome for now.  My specialist actually read the case report in the article I had presented and then agreed that the ocular steroid I was using was the best approach and said that he wanted to see me again in 6 weeks to recheck my eye.  Was that not what I had asked for in the lengthy message?  He even kept the journal article—fancy that!  He reiterated that it would be best to go to L.A. as my surgeon has been doing CXL since the U.S. trials began, but my doctor is doing them now, so what will he do when this happens to one of his own CXL patients?

Who cares at this point?  The kvetchy wheel got the grease again and that, my friends, is the whole megillah.  What a never-ending story it is—similar to reading a long post written in three languages.

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Photo Source: http://www.rottentomatoes.com

I don’t want to write this post.  I had a preliminary, uneventful post floating around in my head regarding my 6-month, post-CXL checkup, but then the crap hit the fan, which I think happens in Airplane, as well.  Oh, I so wish that movie could have been on any of the boring channels of Dish I get at the motel last night.

Once again, I am left wondering how this happened when I’ve been at my ophthalmology clinic at least every month since my surgery.  As I was in a clinical trial for cross-linking (CXL) for keratoconus (KC), I have had post-op checkups at 1 week, 3 months, and then 6 months, which was yesterday. These are all done with my local corneal specialist.

However, due to the IPL treatments I’ve had every month or so for meibomitis, I have been seen more often by a different associate at the clinic.  Since I pay cash for the IPLs and they bill insurance for the office visit, could he not do a 1 minute exam of my corneas to make sure all is well due to my status as a post-op patient?  I also mentioned to both doctors I see there that I was diagnosed with Ehlers-Danlos syndrome (EDS) this winter, which due to poor wound healing, should have led to more frequent post-op checkups due to the complications I already had.

I went in yesterday afternoon expecting to wait hours for my usual 5 minute appointment, get no answers as to why my eyes are still so dry and the sun is still burning my retinas, read a big, lighted board with lots of letters for the FDA, and call it a day.  Things started out fairly well.  With great struggle, my visual acuity (VA) is largely the same.  From right to left, I came in at 20/40 and 20/50.  The 20/50 eye was 20/40 last month, but it fluctuates and this technician isn’t my favorite.  I wan’t worried and that was my better eye pre-op. The fact that my bad eye is still holding at 20/40 when it was 20/100 pre-CXL is atypical and great news.

My doctor checked my eyes for dryness first.  He said that my eyes were a 5 on the dryness scale due to the IPLs and possibly the Restasis and were around a 12 before—is that the 1-10 scale and was 12 added for emphasis?  He noted dry spots on my left cornea, which was my better eye dry-wise and keratoconus-wise.  Well, that’s strange.  I was just wondering how I’m a 5 with no tears and mentioned I had ointment and liquid gel drops in my eyes, but he said he can see beyond that. That didn’t answer my question really, but I figured that this too shall pass.

Then his assistant put the yellow drops in my eyes and maybe another drop and then he did an in-depth corneal exam.  It seemed all was well, until he stopped and told me I had central corneal opacity and a scar forming in my right cornea, or something along those lines, as I tend to experience hearing loss at times like this.  At least he was talking and giving me more than 5 minutes this visit, so I asked what that meant as it didn’t sound good.  He told me there was cloudiness in my cornea and something about a scar and that I needed to see my Top Doc CXL surgeon in L.A.  He said, “When can you go… 2 weeks, 4 weeks?”  Oh, this wasn’t good at all. Here is why:

Corneal opacity is a disorder of the cornea, the transparent structure on the front of the eyeball, which can cause serious vision problems. Corneal opacity occurs when the cornea becomes scarred. This stops light from passing through the cornea to the retina and may cause the cornea to appear white or clouded over.

There are many causes of corneal opacity. In some cases, your doctor can recommend a treatment that will reverse the opacity and lessen your chance of needing additional treatment, such as surgery.

Article Source: www.http://www.med.nyu.edu/content?ChunkIID=102906

I just kept staring at him and the gears in my head were going wild.  CXL is very safe, I saw the best surgeon, and my right eye, which was the bad eye, was not in the advanced stage or super-severe stage of keratoconus.  If it were, I would have been disqualified from the clinical trial and my surgeon would never have taken the risk and done a corneal transplant instead.  Nothing was making sense.  Would I get a blind, milky-white eye like that 200-year-old jihadist that died awhile back?  I thought keratoconus was bad enough?

I told him there was no way I could get back to L.A. again.  I asked if he could send a letter and maybe my surgeon could explain what was going on from that and a record of my exam, but my doctor said he really needed to see my eye, but would send a letter, regardless.  Forget the rides, the hotel, and paying cash to see the out-of-network surgeon who I had to sell a kidney for to get the bilateral CXL—now I’m having some possibly serious complication from my EDS as I have a heart murmur that has always been asymptomatic.  I can’t see a cardiologist until the end of March and am hardly able to walk around the grocery store due to shortness of breath and horrid fatigue, which seems to be caused from the heart palpitations and regurgitation. This was enough worry for one month and now this?

I came back from the appointment in a state of shock and sent a 1,000 word count e-mail to my CXL surgeon, who luckily gave me his e-mail address months ago—fairly sure he’s regretting that one.  I stayed up all night scouring scholarly articles in medical journals to try to understand this.  I found a few things worth noting.  Eyes with very thin and very steep corneas are more at risk of central corneal opacity and scarring.  In one study, 8.6% of eyes developed significant scarring withing 1 year post-CXL as a result of this.

A dry article discussing 

My right eye wasn’t as advanced as these eyes steepness-wise per my topography and my surgeon’s remarks and although I have no record of my corneal thickness, it still made little sense. Could the EDS be behind it?  I have type II and have tissue fragility, poor wound healing, and terrible scarring from incisions, although I didn’t have any incisions with CXL.  Why did this happen then?

I found 1 study indicating that patients who developed central corneal opacity and scarring had complete resolution within 1 year, but now the article is hiding in Google somewhere.  I don’t recall the problem was connected to thin or steep corneas, either.  I have to dig pretty deep to find these and forgot to leave bread crumbs for that article, which would be called bookmarking it.  Great.  That was my big ray of hope and don’t ask me how a scar resolves.

Regardless, some of these studies were older and with any new technology, one makes improvements.  There is now a protocol using a hypotonic riboflavin solution along with the standard riboflavin solution to plump up the cornea during CXL to prevent opacity and scarring.  It is also necessary to check for the flare to ensure the cornea is fully saturated with riboflavin and then to measure corneal thickness following that to avoid problems due to an overly thin cornea during the surgery.

Another dry article discussing this

Did my surgeon not do all that?  I wrote about the flare in a past post, but I couldn’t remember anything about measurements and who knows what was going into my eyes? Why was I doubting one of the best keratoconus specialists in the world?  Well, read my former post if you’d like to know why I don’t trust anyone with M.D. after their name.

Luckily, I found an article he wrote discussing the importance of all the above.  Phew!  Good doctor!  I also read about a patient he had with the same problem, but shortly after CXL and they had vision issues from it.  I presume I don’t since my VA hasn’t changed in that eye, not that I can see well due to the KC.  He resolved it with long-term steroids and antibiotics. Hmmm…

Now, steroids (drops, pills, or whatever) make me very sick and I’m still losing my hair from those following CXL, but according to the article, this is only 2 drops a day and in 1 eye versus 4 drops a day in 2 eyes post-op, thus 2 drops instead of 8 drops a day.  Could I pull it off?  I have a full bottle of the exact steroid he used on this patient, as my local doctor prescribed it for the dryness and I stopped it withing 24 hours due to side effects, but I was on the 8 drops a day protocol.  I even have a good antibiotic left over from my CXL.  How is an antibiotic going to get contaminated—it’s fine.  Why not?

So, as I am not one to sit around, like to be my own doctor and am damn good at it, would never be able to get a corneal transplant due to the EDS and cross-linked eye (yes, this appears to be causing rejection), and had a published treatment protocol to follow thanks to my surgeon, a medical journal, and Google—I whipped out my ocular steroid and ocular antibiotic last night and considered it treatment day #1. As a disclaimer, please do not follow any of my advise on playing doctor.

Oh Lord, tell me I don’t have to go to L.A. and that this protocol will work and not make me sick.  I really picked the wrong week to stop sniffing glue, quit amphetamines, quit smoking, quit drinking…

Where’s a damn Blockbuster when you need one?  It’s not like I can order Airplane from a motel room.

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Image Source: http://www.brooksidepress.org

It seems like it was just yesterday that I had bilateral, “epi-off” cross-linking (CXL), but I am just shy of 5 months post-op this week.  My recovery has been beyond slow and rather atypical, so please don’t assume you will have the same issues.  If you are having them and found my post, then great—there are more of us out there.

As I’ve mentioned in prior posts, I have an unusual form of KC that hits later in life and progresses extremely fast.  Also note that thanks to keratoconus, which did have a silver lining, I was finally diagnosed with Ehlers-Danlos syndrome (EDS)—a genetic connective tissue disorder that presumably caused my KC and is also causing the slow healing.

Aside from the pesky dry eyes, which I wrote a whole post on, my biggest gripe at this point is with light sensitivity.  It has slowly improved with time, but it just seems abnormal to be dealing with this problem still, although a fellow blogger who had her CXL around the same time as mine has the same issue still, too.

Following CXL, any light source was a problem and I saw sparklers and halos around anything that emitted light.  Then there is glare, which I lump into the same category and is still a bit of an annoyance now.  However, I recall not being able to even look into the silverware drawer the week I recuperated from CXL at my mother’s house.  So, as long as I’m not dealing with glare from the sun, I won’t complain about trying to sort through my coins.

At this stage of the game, I have two big grievances with light sensitivity.  The first involves using a computer due to the bright, white screen.  For weeks after CXL, I couldn’t even open my laptop, but it’s still a nuisance now even if things are getting better.  I’m not an IT person, but one of my fellow bloggers—who doesn’t even have KC—really helped me out with her comments.  She suggested I adjust my screen’s brightness and other tips.  Seriously, if you’ve never dealt with this, why would you think such an option existed on your computer?

Needless to say, one problem has been semi-resolved and I also learned I could blow up my entire operating system! That has been great since I can’t wear contacts still.  If you have a PC, you can easily tinker around with your computer via Control Panel > Appearance and Personalization > Display (or at least that’s how it is in Windows 7 land).

My second issue involves seeing things outdoors during the day and driving.  Regarding the latter, I can drive at night now although headlights are irritating, but I absolutely cannot drive in the day due to the sun.  I live in the desert SW of the U.S. and the sun is usually a big ball of intense light, even though it’s freezing cold now.  I get a “whiteout” effect—almost as if I were constantly driving west as the sun were setting.

The other odd thing is that while I’ve had this massive improvement in my visual acuity, I have typical, keratoconus vision with ghosting outside in daylight, which just adds to my reluctance to drive.  This has improved drastically too, but before CXL, I could get one good drive in 1st thing in the day. After that, I shouldn’t have even been on the road.

I am still healing and my vision is still fluctuating a bit, but I have stable vision throughout the day due to the cross-linking and that is wonderful.  I also am noticing that I am starting to be able to read some “fine print” on things, although if it’s too small I struggle and get a headache between my eyes.

While my visual acuity jumped to 20/400 post-CXL, I’m currently at about 20/40 in both eyes, although that last line is a struggle to read.  Pre-CXL, I had monocular vision and was only using my better eye—now my slightly worse eye, which was at 20/60 and rapidly progressing like my other eye, which was no longer functioning.  Sort of confusing.  I wish I could explain it all in diopters, but the clinical trial follow-ups don’t seem to include a refraction.

So, aside from the horribly dry eyes, my hair that is still falling out from the steroid drops months after stopping them, and the light sensitivity and inability to drive a car during the day (huge problem!)—I am so glad I was able to max out my credit card and be one of the lucky few to get into a CXL clinical trial in the good ol’ US of A.

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Photo Source: http://sr.photos2.fotosearch.com/bthumb/CSP/CSP097/k0974598.jpg

Three weeks ago, or nine weeks after my cross-linking surgery, I started to notice more hair than normal in the shower.  Then I noticed clumps of hair in my wide tooth comb.  Soon enough, the drain in the tub began to clog until I opened it up and found the mother of all hairballs.

Now, I’ve had this happen before.  When I first got sick in 2001 with what I was told was fibromyalgia—stay tuned for a possible misdiagnosis post* (see update), my hair started to do the same thing until I lost at least 1/2 of it, if not more.  It finally stopped falling out but didn’t grow back to its original thickness until I finally forced a GP to put me on thyroid medication, as my TSH was borderline high.  It eventually grew back, but fell out two more times (not as badly) when I switched doctors and they subsequently screwed up my thyroid by switching my medication.  However, this round, my hair is not only falling out but also has this strange texture, which makes little sense considering my hair is finally getting long—nearly 3 years later—and has a lot of “old growth.”

I chalked it up to stress on my body from the CXL surgery (read my last post) or the stress of dealing with my mother pre- and post-op.  That didn’t quite fit the bill when I realized I had pretty traumatic surgery both physically and mentally in 2006 and no hair loss.  Hmmm… What could be the root cause?  I always seem to diagnose every malady I have so I just kept focusing on everything “cross-linking.”  Then it hit me like a ton of bricks (or a giant hairball) while I was trying to get my Carol’s Daughter shampoo and conditioner through my now beyond coarse, dry, and unruly hair—that was a plug for CD… Great for ethnic, curly hair.  Anyway, it had to be the Pred Forte eye drops, also known as steroids.

I started those drops on day 5 with instructions to use them 4 x day until told to stop.  Steroids are used after CXL to prevent hazing, which I got anyway, although it went away within 2 weeks.  I cannot take steroids, so I was worried about that drug, but an eye drop?  How much can get into your system? A lot.  I instantly got the insomnia—even while on Ambien to sleep, the night sweats, and my chronic musculoskeletal pain was through the roof.  I stuck it out for 17 days and got permission from my surgeon in L.A. to stop the drug.  All side effects subsided, or so I thought.

After researching this tonight, it appears there’s a huge connection between steroids and hair loss—a lot of hair loss—and that it continues long after you stop them.  I do know that it takes 3 months for hair that has fallen out of the follicle to actually grow—or fall—out of your head, so I really am hoping this will stop soon since I wasn’t on the steroid for that long. The odd thing is that it changes the texture of your hair and makes it coarse, dry, and frizzy, which would be my natural texture—plus curly, so it’s a hot mess right now.  I do get a trim next week and hope more layering (I lost any guys reading this) will hide the thinning that is rather obvious with my dark hair and pale scalp.  I can’t chop it off after nearly 3 years of growing it out!

I know this might all seem trivial, like for those on chemo or men who are going permanently bald, but I’m famous for my dark, thick, curly hair and at this point, it’s all I have going for me!


*Update: I was diagnosed with Ehlers-Danlos syndrome (EDS) by a geneticist in November, 2012.  It is an inherited connective tissue disorder that is sometimes misdiagnosed as fibromyalgia and can cause keratoconus.  I have written about this on my blog.

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Photo Source: http://www.amazon.com

Here is the good, the bad, and the ugly of my experience following cross-linking (CXL).

To learn what it’s like to get cross-linking surgery, you can read my post I GOT CROSS-LINKING!

Please note that everyone has a different experience with CXL. I just had my 3-month, post-op follow-up with my local ophthalmologist as required by the FDA for the CXL clinical trial I was in.  However, I haven’t written about my experience with CXL post-op in detail, so I’ll start there.  Again, this was my experience and it’s not typical.  I saw a top surgeon in Los Angeles, but my body has a strange reaction to about everything.

I had unremarkable, bilateral cross-linking surgery in the late afternoon and was given anesthetic drops mixed with a medication to dilate the eyes to take home, which is supposed to help with pain.  My doctor mixes these drops, as they aren’t readily available in a pharmacy.  I also had a steroid eye drop to start on day 5 and an ocular NSAID for pain.  I was told that some patients have little pain and some are in agony, and I guess I was unlucky enough to fall into the latter category.

I got back to the hotel with my blackout sunglasses and noticed that I had 2 black eyes—common for me and a shock to my doctor.  I also had red, irritated eyelids and my right eye was bloodshot from surgery.  I immediately started using the numbing drops and the NSAID drops as often as my doctor said I could.  I was very uncomfortable and it felt like acid had been poured into my eyes.  I had to sleep and shower with special goggles but I hardly slept as I woke up every hour from the pain and had to put in more drops, so it was a long night. The lights were killing me and my vision was worse, so trying to get into the hotel bathroom with the fluorescent lights was not fun.

The alarm woke me up very early again for my post-op appointment the next morning.  Aside from the eye pain (still doing those drops 3 times an hour), I was feeling really nauseous but managed to get cereal and tea down. We packed, checked out, and headed back to the doctor’s office. My nausea was getting worse by the minute.  The parking was in a hot, humid, underground garage and suddenly I was crouched on the floor as the blood rushed out of my head—I tend to pass out when I feel really sick.  I didn’t want to get into the elevator but had to get out of that garage and into a bathroom, STAT!  I remember the bathroom being in the hallway and needing a key, but luckily a woman was coming out and I just grabbed the door, ran in, and threw up about a dozen times in the toilet—and I never throw up!  It was horrible.  Well, aside from my eye pain, once I cleaned myself up, I felt much better.  Sort of reminded me of why I don’t drink.

I was rushed back to see my doctor, who did an eye exam and said everything looked okay.  He thought I was sick from the Vicodin, but I told him I had refused the Rx because I do get sick from narcotics.  I think if I could have taken 2 days of narcotics, the eye pain would have been much more tolerable. So, he figured it was my body reacting to the pain and put more numbing drops in my eyes—the same anesthetic ones I had with me and had my eyes doused with in surgery.  I had a few more things to do there and then was free to go and head back with my mother to her home 2 hours from L.A.

Well, guess what?  I got nauseous within 5 minutes of my doctor putting those numbing drops in, so now I knew what the culprit was.  I get very sick from general anesthesia so I suppose that nearly 24 hours of those drops was enough to make me sick.  Then I had to get in a car while wanting to throw up, all while being stuck in L.A. traffic on the freeway. I remember putting something over my glasses to block out all light and I reclined the seat and somehow made the trip back, which took about 3 hours due to the traffic.  I kept the NSAID drops nearby and used those every hour to help with the pain.

When I got to my mother’s house, I went straight to bed, which is what you’re supposed to do right after surgery, not 24 hours later.  It’s hard to get comfy with those goggles you have to wear and sleeping was hard since I was still waking up every hour to put in the NSAID drops.  I used Acuvail, by the way. Actually, I normally can’t sleep without Ambien, but after days of 4 or 5 hours of sleep, I was able to take a nap.

I woke up and remember having chills and chattering teeth, just like when I’ve had general anesthesia, so that sealed the deal that it was the drops that did me in.  Again, most people don’t have any problems with anesthetics and won’t deal with any of this.  I know I washed my face that night.  I wasn’t supposed to get my eyes wet for a while so I had my goggles on.  I must have eaten something—wish I could have seen and taken notes—and went to bed with my Ambien. The 2nd night I woke up at least 5 times from the pain and to douse my eyes with the Acuvail and lubricating eye drops, but the pain was better than the 1st night.

The next day, which would be day 2 post-op, I stayed inside and felt like I had the flu.  I would say this was the medication still lurking in my body and have never heard of any of these side effects.  The lights were bothering me at night inside the house (not horrible) and the glare from the silverware drawer was quite bad.  Again, I was using the Acuvail every hour still and my vision, as expected, was getting worse. That night I woke up maybe 3 times from the pain, so things were getting better, even though my vision was getting even worse.  I think it was the 3rd day that I finally felt like I wasn’t under the weather and even though the pain was still bothersome, I was almost sleeping through the night.

I returned home by car on day 5 post-op.  The pain was better but my vision was so distorted I couldn’t see a thing, which I assumed was due to my liquid bandage contact lenses being so dirty and full of all the medications.  I had also started the steroid drops, but all seemed okay with that. The several hour drive home at night was like the 4th of July. I couldn’t make out anything but the lights, which all looked like sparklers and fireworks.  I had my drops handy and was still on those every hour, with my doctor’s permission.  I got back home and thought I just had to wait until the next day to see my local ophthalmologist for my 1 week post-op and to have the contact lenses removed.  Yay, only one more day of those goggles.

Well, things didn’t turn out as expected.  I saw my doctor who went into alarmist mode since my epithelium hadn’t healed. The cells had partially grown back in my right eye, which had better vision now, and hardly grown back at all in my left eye, which came in at 20/400.  So, no getting the contacts out.  He scheduled me for a recheck in 48 hours and if things weren’t better, he was going to have to put something over my cornea in my left eye to get it to heal.  He blamed the dry, desert air and of course, we all have A/C going when it’s over 100°F.

I decided that if I doused my eyes with my liquid gel drops every 10 minutes and taped my eyes shut before bed—they’re half-open when I sleep—that I could get the epithelium to heal in both eyes and it worked!  I got the contacts removed (no difference in vision and I’d actually lost one contact from all the drops), got permission to sleep and shower without goggles, and was on my way.  My vision was dramatically better with the epithelial cells back on my corneas, too—well, not 20/400 anymore.  I thought I was over the hump.

Not so fast.  My dry eyes had now entered the no-tear-production zone and I was an achy mess—worse than normal—and having horrible night sweats.  I have problems with oral steroids and get those symptoms minus the dry eyes, so at day 17 I finally got off the steroid drops after talking to my doctor in L.A. and my symptoms were gone, except for the horribly dry eyes.

My right eye, which was my worse eye pre-op, had great improvement from the surgery and I have somewhere between 5-7 lines of improvement in my VA.  My left eye, which is healing much slower, currently has about the same VA as pre-op, so I’m much more symmetrical and have binocular vision again.  My VA will fluctuate for 3-6 months so I still have a ways to go.  I also no longer have worsening vision as the day goes on.  How I see when I get up is how I see when I go to bed.  How nice.  So, with that right eye I appear to be the poster child of CXL, but I have this slow healing of my epithelium and the severe dry eyes that have left me using ocular ointment (yes, essentially Vaseline) in my eyes every 30-60 minutes.  This is apparently not a normal side effect and I’m wondering if it will ever go away so I can get contacts and not have to explain to everyone why my eyes, eyelids, and eyelashes are so shiny.  Not to mention my eyes hurt!

So, this is where I am 3 months post-op and I would hardly say it’s normal.  I can’t drive during the day due to the light—a whiteout effect of sorts—and I rarely drive at night since my depth perception is still off and I just can’t see well enough. Near work is still impossible, but I finally figured out how to blow up the font on the internet via Google Chrome and I write my to-do lists with Sharpies and big sticky notes.

I sure wish I could see to pluck my unruly eyebrows and file my nails, but I guess I shouldn’t be so petty.  I could be blind, after all.

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Image Source: http://keratoconuscanada.org/images/c3r_2.jpg

Well, it’s been 6 weeks since I had my corneal collagen cross-linking surgery in Los Angeles.  The surgery itself was a breeze.  I was only in L.A. for 2 days so on day one I had the pre-op exam in the morning—basic eye exams for keratoconus, then I went back to the hotel for lunch, and came back in the afternoon for the surgery.  Day two was the post-op exam.

The details are a little blurry now—literally, but I just remember going into a freezing cold room for the surgery and laying in a reclining chair of sorts.  Then my doctor came in and someone put the anesthetic drops into my eyes and he put the thing in your eye that holds your eyelids open (felt that!) and removed my epithelium on both eyes with a laser and then used something to rub the cells off of my eyeballs.  I felt nothing from the laser and the manual rubbing part was just a pressure feeling.  There was a gross out factor because there was a burning hair smell from the process and knowing someone is rubbing your eyeballs is weird.

Since I was having both eyes treated, my doctor’s assistant started putting the riboflavin drops into both eyes every 2 minutes for 30 minutes. She told me to let her know when my eyes felt uncomfortable and she’d put more of the numbing drops in.  I felt like I needed them every few minutes, but was doing fine.

After the first phase of the surgery, I was lead into a room so my doctor could make sure the riboflavin had saturated my corneas and a “blue flare” was visible.  I’m not sure what that is, but I guess I got the go ahead.  Then it was back to the freezing room and reclining chair and the assistant got the UVA machine ready.  She had to take measurements to get it in just the right location.

They did the right eye first and also continued to put the riboflavin drops into the left eye so I’d have enough in there while it waited to be treated.  Once again, I felt the thing that holds your eyelids open (just at first) and then the light was on my cornea.  I couldn’t even see it so I was convinced it wasn’t working, but I guess it was.  The assistant said I should see a flower shape—negative.  I saw a very faint light that reminded me of a very dim moon.  More like half of a moon or some weird shape.  So much for the stories I read of staring into the sun—not at all.  I had to stare at it while she put more riboflavin drops in every 2 minutes and numbing drops as needed.  The hardest part was staring at something for 30 minutes, especially when you can hardly see it.  I was getting really sleepy.

Finally, my right eye was done and everything was switched. Suddenly I could see the flower shape, which was more like a flower made out of cotton balls.  My right eye was my better eye vision-wise pre-op so that must have been the issue. Well, pretty soon I was having trouble staring at that, too. It’s boring and I was getting so sleepy I really could have taken a nap if I could have closed my eyelids.  That’s when I started talking and the 30 minutes went by much faster.  Should have thought of that earlier.

Following that, I went back into the little room and my doctor looked into my eyes again and said, “Good” or something along those lines.  My eyes were dilated for comfort—still confused on that—and bandage contact lenses were put in both eyes to protect my corneas.  Of course, my vision was already worse, as expected.  I was also given goggles to wear in the shower and while sleeping until the lenses could be removed and numbing drops to take home in case the Rx pain drops weren’t strong enough.  I was offered narcotics for a day or so but they make me sick so I declined getting an Rx.  Then, I went back to the hotel with my “cool glasses” due to light sensitivity.

That’s the good part.  It’s taken me 6 weeks to write a post about my surgery due to all the complications which were NOT my doctor’s fault, but due to my very dry eyes pre-op and the fact that I also live—and recuperated—in the desert. I’ll save that nightmare for my next post, but I do have some good news.  While my left eye is healing very slowly, my right eye is reading almost 7 lines better on the eye chart—WOW! Just wish I could drive my car.

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Image Source: http://www.artfire.com/uploads/product/5/795/79795/2379795/2379795/large/dandelions_blowing_in_the_wind_vinyl_wall_art_5337352f.jpg

This title says a lot.  Of course, it’s my favorite Bob Dylan song, but it’s also where many of us dealing with a chronic disease or illness find ourselves.  We’re at the mercy of doctors who don’t have answers, medical research that hasn’t caught up, misdiagnoses, trying one overpriced medication after the other, navigating through insurance companies’ bizarre policies, and on and on.

A little over two weeks ago, I received a call from my ophthalmologist’s coordinator telling me that my doctor had a change of thought regarding my Intacs surgery and would call me personally that night.  It was a Friday.  I was out of options as far as my keratoconus goes, so I knew he would say he thought a corneal transplant in my worse eye was the direction we were going in now.  Needless to say, I was dreading the call.  I waited and waited and no call.  I waited all weekend and no call.  I called the answering service and he wasn’t on-call.  So, I waited until Monday.

I got an e-mail from the coordinator and a call from the doctor saying that their CXL trial was on hold even longer due to the FDA and I needed to go to Los Angeles as soon as possible to get the procedure done there.  I was given the names of two doctors, both of whom I recognized from all my online research.  One gave me an uneasy feeling, but I called both regardless to get the hard facts.

To protect everyone’s privacy, I went with the doctor that I had great faith in and even though I will be in a clinical trial, I can get the CXL done in both eyes on the same day and do all my follow-ups with my doctor here, which is great.  I am paying more, but was able to negotiate somewhat on the cost—doctors pad the price to cover all the follow-ups, which I wouldn’t be doing in L.A.  I am so glad that I got the facts and will not be seeing the doctor that sounds like a snake oil salesman.

Then the big stress came.  I had to figure out how to get to L.A., as I can’t drive except for short trips around town since my soft contacts don’t work for long.  I have a massive fear of flying and L.A. is a doable drive, plus I have a cat I’d rather bring since we’re inseparable.  I arranged for someone here to drive me to the Palm Springs area, where my mother has a winter home (currently empty) and then my mother will fly to her winter home and drive me to L.A.  We need to stay for 2 days so I had to figure out the hotel, etc.  Why does the sick person have to do all of this?  Well, that’s the way things go in my life and why the word “support” is some sort of foreign concept.

My exam/CXL procedure are all scheduled for 9/13/12 and then I return the next morning for a post-op and am on my way back to the California desert, which is hotter than here. I’m just hoping the monsoon will be gone by then, but it’s still lingering this week.  My cat loves it at my mother’s home in California—it’s on a golf course and she’s stuck on a dusty balcony here, so at least she’ll be happy since we haven’t been there in years.

The procedure will be the same as the CXL I was to get here, just in both eyes on the same day so I don’t have to travel to L.A. again.  I’m most concerned about the eye pain following the CXL, as I can’t take narcotics since they make me very sick. I am getting several Rx eye drops and eye drops for pain, so I hope I can tolerate that.

It seems this all should have gone smoothly, but it didn’t.  I had to get medical records from two doctors and there were errors and delays.  Then I had to make copies and organize those and get them in the mail ASAP.  I had all the “back and forth” with the doctor in L.A.’s coordinator to work out the kinks; she and my L.A. doctor are both great and on top of everything, unlike here.  I think it took three days to organize the people who are “helping” me to get to L.A.  I don’t know what took so much time and so many hours, but I don’t think I even ate for a week and my anxiety was through the roof.

It’s very hard to deal with so much all on your own when you are sick, but that’s all I know, and there isn’t anyone to help ever.  So, I just kept putting one foot in front of the other until I got every last detail worked out, including an itinerary since no one can seem to write a date in a calendar.  Having “low vision” makes things hard enough, but it’s the fibromyalgia* (see update) that really makes having to go into “overdrive” so difficult.  In my former life before I got sick, this would have been much easier to handle.

The other thing that is making me anxious right now is what I’m supposed to do after the procedure in order to see well enough to function.  I’m not doing that great right now as it is. I have my 1st two follow-ups scheduled—one is at day 6 to remove the “liquid bandage contacts.”

No one can really tell me when I can wear soft contacts again and I do know that my vision will be worse after the CXL due to the blurriness it causes.  I’m fine that first week since I’ll be mostly with my mother, but what do I do after that?  I have someone who can give me a ride once or maybe twice a week (doesn’t really want to since he’s stuck with driving me to California), but how will I get to my doctor appointments, physical therapy, the pharmacy, the grocery store, etc.?

I know that my corneas need to be healthy enough first, but even if they are at week 2, how can the optometrist get me into another trial pair of soft contacts—my plan until my corneas stabilize—if I have this blurriness problem, as it’s quite possible I will slowly get an improvement in vision and the current Rx I have will be too strong?  How will I even get there?  Again, having supportive people in your life would make living with any chronic ailment so much easier.  Of course, living in a city with functional mass-transit would also be nice.

*Update: I was diagnosed with Ehlers-Danlos syndrome (EDS) by a geneticist in November, 2012.  It is an inherited connective tissue disorder that is sometimes misdiagnosed as fibromyalgia and can cause keratoconus.  I have written about this on my blog.

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Image Source: http://www.altmd.com/mediafiles/SharedImages/Hypnotherapy/BrainCartoon2.jpg

I saw the optometrist at my ophthalmologist’s office for a refraction on 8/13.  I was told this appointment was for “measurements” for the Intacs surgery and the fee was $79.00, so when I just got a refraction, which I had done 3 days prior with my personal optometrist to get the trial contact lenses, I was rather irritated.

An assistant did the whole refraction—not the optometrist—and he only came in for a minute at the end to review the notes.  He informed me that from there I needed to make another appointment with a different optometrist at the clinic to get these measurements I need for surgery.  I expressed my frustration about being given the wrong information by my doctor, but there was nothing to be done.

I went to the front desk to schedule the next appointment and to make sure they were aware that I had brought a copy of the records from my optometrist from the previous Friday, showing that I had “failed” the contacts as required by my insurance’s prior authorization process.  The woman at the front desk had no idea what I was talking about and said she’d never heard of insurance covering Intacs, but that she “works on the medical side of the clinic, not the surgical.”  I told her I had e-mailed the surgical coordinator with the information, but had never heard back from him.  Who was dealing with my much needed prior authorization?

Apparently no one.  I started to get really frustrated, as it had been one week since I saw my ophthalmologist and was told that I needed Intacs because he wasn’t confident that the cornea in my right eye would “hold” for 45 days, which is the waiting period for the CXL clinical trial. Someone should have called my insurance that day and all they would be waiting on would be the proof that I “failed” contact lenses.  I had another appointment scheduled two days later for an unrelated ocular disorder, and just left with hopes that things would be rectified by that time, as the woman at the front desk said she would give my information to the prior authorizations person.

Fast forward to 8/15 (2 days later) and I ran into the surgical coordinator while I was waiting to be seen by another ophthalmologist there.  He gave me some excuse as to why he hadn’t read my e-mail and reiterated what the woman at the front desk had said earlier this week regarding insurance not covering Intacs.  This was a complete contradiction to what my doctor had told me, and he was in the office that day, but has at least a 2 hour wait and you need an appointment to talk to him.  How irritating.  I asked what the cost of the surgery was—again, one eye only—and about died. There was no way I could pay for it without insurance, especially since I need to pay $2,500 for the CXL on my other eye if I get into the clinical trial.

I was really upset at that point, as the front desk wanted to schedule me for the measurement appointment, which would cost $250.  I reiterated again that I was told this would be covered by my insurance and asked what the prior authorization person had said.  She didn’t really answer my question, except to say that it’s usually 90 days to get approval from an insurance company and my eye can’t wait. I was so frustrated and said I wouldn’t have even paid for the contacts if I had known all of this.  Why had my doctor told me a different story?  The surgical coordinator’s advice was to call the insurance company myself, which I already had and was told they needed a code.  I don’t understand why this is my job.

I went home and called my insurance.  I lucked out and got a very competent and capable woman on the other end of the line.  She thought everything they told me was very strange, especially since without the Intacs my insurance will be paying for a corneal transplant in due time.  She got all of my information, as well as my doctor’s, and said she would research coverage on Intacs, contact her prior authorization department, and call me back the next day.

That was today.  Well, did I get lucky.  First of all, no one from my doctor’s office has even contacted my insurance company per her notes, so how could they tell me all that false information?  My insurance representative told me that Intacs for keratoconus were covered as long as I met the criteria, which wasn’t much, and the only thing I didn’t have on 8/6 was the “failed” contacts part.  I asked if she could e-mail me the document and fax it to my doctor’s office, which she did.  I asked her what the review time was, as I really doubt it takes 90 days.  It’s 7-10 business days or less than 48 hours if marked “urgent.”  I asked her to note that on the cover page in the fax. I thanked her a million times over for all her great research and follow-through, as that’s how I function in the world myself.

Now, since I thought a corneal transplant would be my only option yesterday, I made an appointment for tomorrow with my doctor to discuss Plan B out of utter desperation.  Let me say again that I was at the clinic on Monday, Wednesday, and might still be there Friday.  Ridiculous.  I didn’t get off the phone with my new friend at the insurance company until after 5 pm, so even though the office staff and doctors are still there, the phones go to the answering service.  I had them leave word with the woman at the front desk that a fax was coming and to please call me, as I needed to cancel the appointment with my doctor tomorrow since it was no longer needed.  She never called me, of course.

I also e-mailed a rather stern message to the surgical coordinator and attached the insurance document with instructions to “please get this into the right hands and expedite it ASAP.”  Now I will have to call in the morning and hope they don’t charge me for cancelling the appointment I never needed, thanks to them.  They get paid to do this job and it’s stressful enough to be losing your sight, especially without a true cure out there.

Sometimes I just want to give up due to peoples’ complacency, but I know I have to keep pushing forward and not let anyone get in my way.  I was never the type who needed to be everyone’s friend, and in this situation, my assertive personality (“the squeaky wheel”) has benefited me again, so long as my doctor’s office now sends the information my insurance company needs to get this procedure covered.

Feeling rather disgusted by nearly everyone tonight.

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