ALL BARK & NO BITE: I JUST NEED A SPINAL X-RAY!

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

I live in a weird city with weird people.  I also live in the ‘hood, which is an ethnically diverse mix of undesirables and makes it even more interesting.  It’s not the South Side of Chicago by any means.  The Southwestern U.S. was largely developed in the latter-half of the 20th century, so imagine rows of mid-century, rundown strip malls filled with liquor stores, pupuserías, laundromats, payday loan shops, and taquerías jammed between big box stores and junkies roaming around every parking lot trying to hustle a buck off you.  Due to my low vision, lack of rides, and the sun setting later, I’m stuck attempting to drive during the day, which has forced me to access the medical care in this stellar part of town whenever possible.

I have needed an X-ray of my spine since I got sick 12 years ago, as I have a bizarre vertebra jutting out to the right in my lower cervical spine and mild scoliosis in my thoracic region, combined with unrelenting back pain from Ehlers-Danlos syndrome (EDS).  I finally got my new PM&R doctor to refer me to an imaging center and I found one within a mile of where I stay.  It is also the only place that takes appointments, so I wouldn’t have to sit for 3 hours, which really hurts.  I called and asked for the latest appointment, which was at 4 pm and the receptionist told me the X-rays would be taken at 4:30 pm—typical of how imaging centers work so that everything runs on schedule.

As I have difficulty filling out forms due to my vision, I picked them up a week prior so I could take my time and fill them out in the best light.  It took me about 1 hour to find the place as I can’t read building numbers or the signs that say what is in the buildings.  Just trying to drive is enough of a nightmare. After numerous attempts and driving in circles, I eventually went into the right building and found the center, but it was closed.  I tried another day and finally got the forms.  It’s part of life with keratoconus, so I didn’t make a big deal about it, although my low vision made me rather depressed that day.

This Friday, I had my appointment for the spinal X-ray.  I was running almost-on-time, but got there 1 minute late and had all the forms filled out already.  I gave the front desk woman the forms, with a brief explanation as to why I already had them, handed over the necessary cards, and was told I was after Barbie Big Boobs, a typical look in the ‘hood due to all the strippers and hookers—I mean escorts, and that it would just be 15 minutes or so.  Wonderful!  I didn’t have to wait 3 hours like I do at the eye doctor or would be doing at the walk-in imaging center across the street.

I wasn’t feeling well as I’d pulled several muscles that go from my ear down to my shoulder joint in my sleep (again) and my whole body aches chronically in general.  It’s all a typical day with EDS.  I just wanted to get the X-rays over with as I had to get my brake light fixed and then go to the pharmacy and blow more cash (again).  I also hadn’t slept much due to the steroids I’m on (again), which doesn’t help anyone out.  Yet, I complained to no one and had my smiley face on while I took my seat.

There was a woman in the waiting room I’ll call Misty, a creative, white-girl name like her real one, who was blabbing with her friend on her cell phone in a very loud and annoying voice and using words that were definitely not appropriate in a small, public place.  I could sort of make out her face and she looked like the dog above.  As a disclaimer, if your name is Misty, don’t take offense.  I know a woman named Tiffani—that is an i at the end—who is nothing like her name.  *Edit, I ended up losing my housing in part to Tiffani so yes, she does live up to her name.

Suddenly, Misty got off her cell and began to yell at the front desk woman from her seat.  It appeared her complaint was that she had an appointment on Sunday for an MRI, but they had called to let her know there was an opening on Friday if she would like to reschedule.  Obviously she rescheduled, as she was sitting a few seats to my right.  She went on and on about how she was told her appointment was at 4 pm, not 4:30 pm. She told the front desk woman to, “tell the guy in the back to hurry up,” which the front desk woman stated she couldn’t do. She also added that the MRI of her back would take 2 hours and she couldn’t be there all day.  That’s amazing as I’ve had an MRI of my back done in 30 minutes or so.

She demanded to know who had told her to come in at 4 pm as she had stuff to do.  The woman calmly told her it was someone in scheduling.  Misty demanded she give her the phone number and she whipped out her cell phone again. She seemed to think her cell phone was akin to a Glock 9.

Someone must have answered in scheduling and Misty said she wanted the supervisor.  She abruptly had a calm, quasi-professional voice, aside from her confusion of past participles as she stated, “I wouldn’t have drove all the way over here to wait 30 minutes.”  It’s driven, Misty, driven!  She went on and on again about her predicament and was so infuriated that her appointment was really at 4:30 pm. She told the supervisor how the front desk woman would do nothing and wouldn’t even go to the back and tell the imaging guy to hurry up, despite her asking.  She had a fondness for ending every sentence with, “You know what I’m saying?” and there were a lot of uh-huhs on Misty’s part as the supervisor must have been trying to appease her. She just felt so special that someone was listening to her sob story.  Did it ever occur to her that she would be waiting 30 minutes on Sunday, as well, if she hadn’t rescheduled?

Now, I am one who often jumps into weird situations in this weird city in a “What Would You Do?” scenario, but I just decided to sit there with my finger in my ear in attempt to block out Misty’s ranting and hope the tech would soon be done with Barbie Big Boobs, who was also there for a spinal X-ray, presumably due to her Super Size implants causing an achy back or possibly her 6″ stripper boots throwing her off balance.  Poor thing.

I couldn’t help but take stock of my situation at that moment. How many hours of frustration did it take for me to get and fill out the forms due to my low vision?  While sitting in the waiting room, I wasn’t able to see the TV or read a magazine or do much of anything.  I still had a racing heart from driving there in daylight and pulling a U-turn on a major thoroughfare and praying there weren’t any oncoming cars that I couldn’t see.  I kept rubbing deep into the knots in my neck and shoulders and wishing that for once in 12 years the pain would stop.  I was worried about what else the X-rays might reveal, as I already have 2 troublesome spinal issues.  I spent over $13,000 USD on medical bills last year.  I live in a motel due to being broke, on disability, and other factors.  Unlike Misty, I have no friends to call on my cell phone, which is actually good as I don’t have many minutes. It’s not a smarty-pants phone and I don’t pretend it’s a Glock 9.  I wasn’t complaining to anyone about anything.  I just sat there in the distorted-looking room while forced to listen to Misty’s temper tantrum over nothing.

Finally, my name was called and I got changed and went into the X-ray room.  I had to pose in bizarre and uncomfortable positions over and over and then lie on a hard table that hurt my whole body while the tech continued to manhandle my achy self in order to straighten me out while my barely 100 lb, skin-and-bones body tried to stay covered in an XXL gown, which was all they provided.

If your female body is half-exposed due to being underweight from a genetic disorder that takes away your ability to eat and digest food and the gown doesn’t stay on because you’re 1/3 the size of the average American male, then that’s your own fault I guess, but I didn’t complain and I just kept trying to cover myself up while making a joke about it.  I am quite sure the imaging guy was disappointed he got stuck with short Olive Oyl after X-raying flirty Barbie Big Boobs with her head of platinum extensions and perky bustline.  I could be legally blind and spot all that.

I was finally done after 20 minutes or so and as I headed out, I could see that Misty was gone, unless she gave up the corner seat to go have a slim n’ sassy Misty cigarette. Apparently, the important stuff she had to do really was top priority.  I could only imagine what choice words she said on her way out.  The front desk woman was now blabbing on her own cell phone—such professionals here, but I needed to make sure the report was going to my referring doctor. She looked up my name and said it would be sent—all while her friend was on hold.  I told her I hoped she had a better day and was sorry she had to deal with Misty, which she appreciated, so I did my good deed for the day.

Here’s what I would love to know.  What was so tragic about Misty’s life that she had to throw a barking, hissy fit over something so idiotic and ruin everyone’s day?  Who doesn’t wait a minimum of 30 minutes for anything in the U.S.—especially when dealing with our healthcare system?  What gives anyone the right to talk to an innocent party in such a demeaning way and disturb an entire waiting room due to their need for attention?  This is not appropriate behavior and makes it harder for cordial patients, like me, to get treated with respect when I finally do find functional healthcare.  There are standards that are followed in any medical center and this issue didn’t warrant any complaints. Of course, there are times when it is necessary to take a firm stance to get things done, but this didn’t fit the bill and it’s not how a decent person takes care of business, regardless.

If the Mistys of the world really want something to complain about, they should walk in my shoes for a day.  I can only wear flats due to EDS, which may make it a little easier, but I doubt they would last even 10 minutes.  Bark, Misty, bark—it isn’t going to get you out of this one, either.

THE ART OF KVETCHING: HOW TO WORK THE AMERICAN HEALTHCARE SYSTEM

Image source: http://www.amazon.com

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.

LOOKS LIKE I PICKED THE WRONG WEEK TO STOP SNIFFING GLUE

Photo Source: http://www.knowyourmeme.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 wasn’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 within 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 one 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 within 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.

FAILURE TO DIAGNOSE & WHY BAD DOCTORS SHOULD BE EXILED TO AN OBSCURE LAKE IN MINNESOTA

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

What do you call the person who graduated last in their class in medical school?  A doctor.  A good family friend, who is a retired registered nurse and was married to a doctor in the genius category, told me this about 15 years ago when I, an über-perfectionist, was beating myself up about something I no longer recall.  Little did I know what good advice that would be when I became sick in the United States, officially home to the most deplorable healthcare system in the modern world.

The medical care in the city I live in must be the worst in this country by far.  I had better doctors when I lived in the 3rd world and am sick of it—pun intended.  At this point, I simply refer to it as bad medicine.  A medical doctor isn’t required to have great bedside manner, but they do have to adhere to certain standards in America, including the obligation to do no harm. This all stems from the Hippocratic Oath, or some version therein, which medical doctors take before practicing medicine.

The Hippocratic Oath is one of the oldest binding documents in history. Written in antiquity, its principles are held sacred by doctors to this day: treat the sick to the best of one’s ability, preserve patient privacy, teach the secrets of medicine to the next generation, and so on. “The Oath of Hippocrates,” holds the American Medical Association’s Code of Medical Ethics (1996 edition), “has remained in Western civilization as an expression of ideal conduct for the physician.”

Article source: http://www.pbs.org/wgbh/nova/body/hippocratic-oath-today.html

While I have seen many doctors in this city act in complete contradiction to this oath, my primary issue is with failure to diagnose.  It’s not specifically spelled out in the Hippocratic Oath or the Optometric Oath that one cannot fail to diagnose, but it is commonly accepted to be a violation. As a result of numerous doctors failing to diagnose my keratoconus (KC) in a timely manner, when it was rather obvious and the first disease that should have been ruled out based on my symptoms, I have permanent vision loss and distortion that could have been prevented via cross-linking surgery (CXL) in the early stage of the disease.  My poor vision has limited my life even further and is absolutely inexcusable.

I know these doctors failed to diagnose me because I had to obtain and send my medical records to my cross-linking surgeon in L.A. and I reviewed them one by one.  The blatant inattention to the obvious symptoms in my records by numerous doctors was staring right at me through my distorted vision.  If I could read the medical assistants’ notes, then so could they.

Let’s start at the beginning.  In 2006, I developed meibomitis, a disorder of the meibomian glands which affects the lipid layer in the tear film and causes a multitude of problems. After seeing a ridiculously incompetent ophthalmologist in this city, I found my current doctor, who tried to treat it for years without much luck.  I was always given an eye test before seeing the doctor and my visual acuity (VA) was noted in my chart.

I also saw yet another optometrist in 2007 to try and get a new prescription for 21st century glasses due to very mild myopia I’d had for 8 years, but the glasses gave me headaches and made me feel cross-eyed as usual, despite numerous attempts to alter the prescription.  There went a chunk of change.  My prescription was slightly stronger at that time, but I could still see well with my very old, ugly glasses, so I relied on those for long drives at night.

Due to the meibomitis, I was at the ophthalmologist’s office several times a year.  As mentioned, my VA was noted in my chart with each visit, so I have a lengthy history of my vision. In 2010, I was transferred to a new associate, as he was a dry eye specialist and my doctor was a corneal specialist. He didn’t have a 3-hour wait and it seemed like a better fit sub-specialty-wise so I didn’t mind, but he left town as quickly as he came, which is typical in this city.  Then, in 2011, I got shifted to the fresh-out-of-medical-school doctor who sub-specializes in glaucoma.  This is the doctor who I primarily blame for failure to diagnose.

My vision just went over a few days in October of 2011, at the age of 37.  My night vision had slowly been getting worse, but this was really bizarre.  I was tired of the sub par optometrists, so I made an appointment with the new ophthalmologist, as I presumed this was not normal and much more than worsening myopia.  I saw the doctor that December and he told me my vision was blurry due to dry eyes from the meibomitis, which I didn’t buy.  My eyes weren’t any drier—it made no sense.

Thanks to the records I have, I now know that at that very appointment, my VA was 20/70 in my right eye and the doctor should have been aware I didn’t normally wear glasses or contacts, as that is also noted within the visual acuity section in my chart.  My right eye’s VA had been getting progressively worse at each appointment as well, unbeknownst to me. Regardless, a huge asymmetry in visual acuity is not normal and needs immediate investigation, although I had no idea I even had visual asymmetry at the time. I left frustrated and decided to try to get a prescription for glasses, as I had no idea what else to do.  That was failure to diagnose #1.

I found an optometrist who seemed to have good online reviews.  I saw him in January of 2012 and had some standard tests done, including getting K-readings via a keratometer. This measures corneal curvature and is primarily used to detect astigmatism, but will pick up keratoconus beyond the mild stage.  Following that, I looked through all the lenses he flipped in front of me with uncertainty and he simply told me, “You have amblyopia and mild astigmatism in your right eye and your eyes don’t like correction.”

The last statement made sense due to the glasses fiasco, but how did I have amblyopia as an adult when I never had it as a child?  I had vision tests each year in elementary school and at my pediatrician’s office and was screened for amblyopia, a condition in which the brain stops receiving signals from one eye via the optic nerve.  My mother has it and is blind in one eye as a result and if he looked at my family history, perhaps that was an easy conclusion.  That just sounds like bad medicine.

After getting my diagnosis 6 months later, it turned out I did have an amblyopia-type issue, but not true amblyopia that develops in childhood that the doctor diagnosed me with. Due to my massive visual asymmetry, my brain shut off the signals from my right eye so that I could see better and I soon developed mild, intermittent strabismus in the affected eye as my extraocular muscles atrophied.  I was not aware that I had monocular vision, or that the VA in my right eye had been diminishing for at least a year per my medical records.  My vision appeared relatively the same to me due to my tricky brain only using my left eye, until the keratoconus developed in that eye as well, which is what caused the sudden and drastic change in my vision.

Nonetheless, the optometrist gave me a new prescription for glasses that I could actually wear without discomfort so I thought I finally lucked out, but I didn’t have 20/20 vision with them, still had the odd monocular vision, and there was no improvement in my near vision, which just went when everything else did.  It seemed good enough, until the glasses just stopped working within 3 months.  Now what? That was failure to diagnose #2 and misdiagnosis #1.

I saw the ophthalmologist for the 3rd time in May and demanded he take my deteriorating vision seriously.  He dilated my eyes, which no one had done, told me I had crystals (drusen) on my retinas, and referred me to a retinal specialist. He also stated, “This is not amblyopia”—referring to the traditional kind, which was in my records as something I reported that the optometrist diagnosed me with. Why would an ophthalmologist just assume another doctor’s diagnosis was correct without any records to refer to or confirming this for himself?  He had a look on his face that told me he knew he had screwed up.  That was failure to diagnose #3, or #2 from this particular doctor, unless I lost count.

So, it was off to the retinal specialist in June and more waiting while I was losing a line on the eye chart every 6 weeks.  The specialist said that the drusen were benign and that he couldn’t find any problem with my eyes, although he did note that my VA drastically improved when I read the eye chart through pinholes.  The pinholes block more light, which leads to less visual distortion and increased acuity in certain conditions.  In my right eye, my record states that my VA was 20/100, but pinholed to 20/30 and my left eye had a VA of 20/30 that pinholed to 20/25.  Well, that sounds rather odd, yet he simply told me to return to the optometrist for a stronger prescription.  Did he even review my records, which indicated that I failed a pair of new glasses a couple months prior?  That was failure to diagnose #4.

I waited again to see the optometrist and had an appointment in July of 2012—9 months since I thought this all started.  I had lost even more vision by the time I saw him and ghosting, or multiple images, was about all that I saw at that point.  I had K-readings taken again and not one lens he flipped in front of my eyes helped me to see the eye chart. He abruptly stopped, looked at the little paper from the keratometer, and told me I had keratoconus.

He gave me little explanation and made no mention of it being a progressive disease or that CXL surgery would halt its progression.  He simply said that I needed medically-necessary contact lenses known as hybrids to correct my vision, which were not covered by my discount plan vision insurance, but that he sold, of course.  They are extremely expensive and would need to be replaced often due to my rare, late-onset, rapidly-advancing keratoconus.  That was a direct violation of the Optometric Oath #1:

I will advise my patients fully and honestly of all which may serve to restore, maintain or enhance their vision and general health.

Article Source: http://www.aoa.org

He did tell me I needed to see an ophthalmologist to have a corneal topography done for an official diagnosis and to assist him in fitting me with the contacts.  I told him the name of my clinic and he said to make sure my former doctor—the corneal specialist—did the test.  As I was no longer his patient, it was another 5 weeks for an appointment.

One question still lingers.  At my 1st visit, why did the keratometer give K-readings on my right eye that were low enough to be interpreted as mild astigmatism when my VA was so poor from my cornea turning into a cone that my brain had literally shut off vision from that eye?  I believe the assistant, who performed the test, made a mistake, unless the machine did. In any event, the doctor should have retested my eyes due to the keratoconus symptoms to be sure.  That was human or mechanical error #1.

That was when, despite my terrible vision, I did as much research as possible on what I had, learned it was progressive, discovered clinical trials for CXL to halt the progression, and the rest is history.  The cross-linking greatly improved my visual acuity, which is atypical, and I have binocular vision again as a result, even if it’s keratoconic vision.  My visual acuity pre-CXL, which I don’t believe accurately reflects keratoconic vision due to the distortion, was at 20/100 and 20/60 (right to left).  My VA less than 2 years earlier was near 20/25 bilaterally as the myopia I developed in my mid 20s was very mild.  This was a pure failure to diagnose by multiple doctors, bad medicine, an example of the abysmal American healthcare system, and whatever else can be thrown into the mix.

I know this to be true because a caring and competent optometrist in my hometown of Seattle, who happens to be good friends with my step-father, sent this e-mail regarding my situation shortly before my diagnosis.  Note that he never saw me or my eyes during this time:

There is only one word to describe this…OY…or OY VEY.. There are too many things going on. Amblyopia is a condition that one is born with. This would have been detected early unless the vision was 20/25 or so and wasn’t really a factor. She might have developed a corneal condition called keratoconus, which is a steepening of the cornea with distortion causing blur. This should have been detected earlier with corneal mmts. She may have/had an optic neuritis which is an inflammation of the optic nerve causing a loss of visual field. This is sometimes a precursor to MS. If this were the case, her MD should recognize this and any visual field loss or sudden change. This is all “rule out” testing. Who knows since she was bounced from one Dr. to the next. I would look for a corneal specialist or a Dr. specializing in dry eye.  This Dr. could also evaluate for any corneal irregularity such as keratoconus or irregular astigmatism which may/may not be a problem. I would also suggest a neuro-ophthalmologist to evaluate for any visual field loss or acquired “amblyopia.” They would also evaluate for any other neuro problems in the visual pathway through the brain to the visual center of the brain. In any event, she needs to find someone she trusts and stay with that person as none of these problems will quickly resolve… Thus..OY. 

That is an example of a good doctor—one who is well-trained in diagnostics and concerned enough to leave no stone unturned to achieve a diagnosis.  It’s a huge dose of good medicine.