FRUSTRATION

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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.

THE INSURANCE GAME

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I need to “fail” a pair of contact lenses in order for my medical insurance to cover surgery for Intacs for keratoconus in my right eye.  I was lucky enough to get in today to see my optometrist, just a few days after learning I needed this surgery.  Of course, none of the records from my ophthalmologist’s office were sent, the receptionist never recorded exactly why I was coming in today, and I can’t recall exactly what else went wrong.

I was escorted back to the exam room after having more corneal measurements taken and I explained to the medical assistant why I was there and that I needed my optometrist to prescribe “the cheapest contact lenses possible” (repeating what the ophthalmologist said), as they were just going to go in the garbage since my eye couldn’t go much longer without surgery.  She looked completely perplexed, but I don’t make up these ridiculous rules.  Blame the insurance companies who are now paying for two things instead of one.

My doctor came in and I explained the whole situation once again.  I was having Intacs in the worse eye and corneal collagen cross-linking (CXL) via a clinical trial in the better eye and I needed to “fail” a pair of contact lenses for my insurance to cover the Intacs (let’s repeat this one more time).  I was a little worried that he’d think I was making him lie, but I had copies of my corneal topography—thank the Lord I thought to get those—and he could see my eyes’ progression since this all began about 9 months ago, or at least compare the current topography with my K-readings. He agreed that Intacs were the way to go and would help him in fitting me with the hybrid contact lenses that I will eventually be wearing, since my cornea will be so much flatter in that eye.

My doctor did an eye exam and refraction and prescribed a trial pair of soft contact lenses, but with a stronger prescription than my glasses.  I’ve never worn contacts—and never wore glasses except for really long drives until this year, so his assistant taught me everything I needed to know about cleaning and storing them and how to put them in and take them out.  I had no idea it was such a big deal and figured it was a good primer for the hybrid contact lenses I’ll be wearing in the future.

After that, I went back into the exam room to make sure the prescription and fit were fine.  I wasn’t aware that I could see better, but I got to 20/25 on the eye chart with them in—using both eyes, and I’m at 20/50—using both eyes—with my glasses, which is no longer legal for driving.  Yikes! However, everything close-up looked fuzzy and I still had a lot of ghosting on the eye chart.  Ghosting is seeing the faint, double, or multiple, images of everything you look at.  I could also really feel the contacts in my eyes, but my doctor said that would go away.  Again, best to get used to it now.

Then I had to deal with getting samples of new eye drops since I have very dry eyes from a separate ocular condition I’ll write about at another time.  Apparently everything I currently use will fog up the contacts, but I barely get relief from my “liquid gel” drops as it is and now I’m back to the “regular” dry eye drops.  More frustration and I’d really like to just have my old myopia, or nearsightedness, back and wear my beautiful D & G glasses that cost a fortune a mere 6 months ago.

I headed to the front to check-out and asked what insurance this was going through.  Vision.  I said I thought these were “medically necessary” so my medical insurance would cover it at 85%.  Negative.  Well, there went close to $100 on a trial pair that provide better—but unstable—vision and are good for one month.  Then I asked who would tell my medical insurance that I failed these.  Oh, that needs to come from the ophthalmologist.

I asked for a copy of my records from today so that he’ll have it in writing.  Today’s records were about as botched as my last two, since there is nothing about failing the contacts and the “plan” is to just get medically necessary contacts; it actually says “plan.”  Sounds like he just negated what my insurance needs, but I sure hope it will suffice.

As I mentioned in my ABOUT section, I live in the desert SW and it was probably 110°F today and the sun/glare is a killer, whether you have keratoconus or not.  So, I reached for my sunglasses, but forgot there’s a prescription in the lenses. What to do?  Contact lenses in my eyes and now no sunglasses and it’s due west to get home at 5 pm.

Well, I did make it and noticed that things were clearer, aside from the blinding sun, which was odd.  I came home and could see the TV for the first time in months and the computer is much easier to see, too.  Of course, I have a stronger prescription and I could also see pretty well with my glasses prescribed 6 months ago before they failed me in less than 90 days, which is before anyone suspected I had keratoconus (can I get my $500 back?).

I see the optometrist at my ophthalmologist’s office in 3 days to get measured for Intacs and hope the insurance loophole can be cleared up at that time via the bizarre medical record I got today.  This will also be the third time I’m getting my eyes dilated—sans driver—in 2 months and I’m not looking forward to it.   I had the worst headache the last time, which I blame on the desert sun.

Now I wonder how I will be able to see after Intacs surgery since it’s only on one eye and isn’t a cure.  Do I pay for another trial pair of contacts until I get the cross-linking in the better eye, which hopefully will be within 45 days?  Once both procedures are done, I can get the hybrid contact lenses, but how do I manage in the meantime?

I think I need an Ocular Liaison if one exists.  I also need a rich benefactor, as all this “treatment” is adding up rather quickly.

THE OFFICIAL DIAGNOSIS

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I saw my former ophthalmologist today for a corneal topography, which is the gold standard in diagnosing keratoconus (KC).  My optometrist had diagnosed me with the disease on July 13, 2012, roughly 9 months after my vision started to fail.  That was a Friday, so I suggest not going to a doctor on Friday the 13^th.

General information on keratoconus can be found here.

My ophthalmologist is a corneal specialist and I feel comfortable putting my eyes in his hands, so to speak.  I only wish I had not been shifted around in his practice, as I feel I would have gotten a diagnosis earlier and before my vision progressed to its current state.  I ended up seeing him after killing myself—body and eyes—doing online research non-stop following the initial diagnosis last month.  Forget the worst-case scenarios out there unless you have advanced KC.  I discovered a procedure known as corneal collagen cross-linking (CXL) that is awaiting FDA-approval in the U.S.

For information on CXL, click here.

CXL is approved everywhere but the U.S., per usual.  This procedure stops the progression of keratoconus by strengthening the cornea and has been available in the EU (European Union) since 2007.  After I discovered this, I had to find a way to get the procedure without flying to Europe since disability does not allow for the jet-set lifestyle.  I scoured the internet and came upon some posts from people who were getting the procedure via clinical trials.  I figured I would have to go to L.A., but to my surprise my former ophthalmologist was participating in a clinical trial and my prayers were answered.

If you are searching for a clinical trial for CXL near you, the U.S. government site is here.

So, today I not only went in for the official diagnosis, but also for the screening process to see if I am a candidate for the trial.  I should also mention that since this is a treatment trial, there is a charge of $2,500 per eye, but each trial is different it appears.  Well, what are my options really?  The other bad news is that my doctor is not sure if I am a candidate as they still do not have clear exclusionary guidelines from the FDA, but he thinks my chances of being approved are at about 80%.  There is a waiting period of 45 days per the guidelines and considering the fact that my vision is progressing for the worse so rapidly, we have decided to do the CXL—if I am approved—on my worse eye and I will be getting surgically implanted rings (2 semi-circles) called Intacs in my better eye.  This will flatten my cornea and allow me to have better vision with glasses for now.

For information on Intacs, click here.

Due to my insurance, I need to fail a pair of contact lenses before I will be approved for Intacs surgery.  So, I go back to the optometrist later this week to get fitted for contact lenses and then next week I see my ophthalmologist’s optometrist to get measured for Intacs.

If all goes well after I fail the contact lenses—my severely dry eyes will make me toss them in a day, the plan is to get CXL in the better eye after FDA-approval as Intacs will disqualify that eye from the trial.  In other words, I will get CXL in my right (worse) eye to stop the progression and Intacs in my left (better) eye to improve my vision temporarily until I can get CXL in that eye once it is approved, covered by insurance, and the trial restrictions are a none-issue.  If you are confused, so am I, but the bottom line is that I should be getting Intacs in my left eye within a month if I can get through the insurance loopholes in a timely manner.

What a convoluted process!