Recently, I had my follow-up visit with the PM&R doctor who agreed to see me after I was diagnosed with Ehlers-Danlos syndrome (EDS), classical type. I had seen him a couple times prior to that and was originally his patient for my misdiagnosis. PM&Rs are physical medicine and rehabilitation specialists, and I personally feel they can be a good fit for EDS patients as they specialize in people with chronic, debilitating diseases and conditions.
I originally saw my doctor before my collagen cross-linking surgery and long before I had my scleral contacts that I’m forced to wear when I have to go out and I literally couldn’t see his face or make eye contact with him. However, it wasn’t solely due to my vision—it was also due to something I didn’t pick up on for awhile. You see, my doctor has some type of social phobia and does things like stand as far across the room from me as possible, tear through my file like a mad scientist while not really looking for anything, avoid eye contact with me at all costs, and the most bizarre: putting his head down on the counter when we were in a very small room and he couldn’t escape my gaze or me. So, the faceless doctor image could also be replaced by a faceless patient I suppose, or an image of this patient talking to the wall to not upset the doctor.
Now, his behavior makes any type of interaction rather difficult, but I’m not one to make fun of anyone with a phobia—I just think they should choose their profession better. For example, as I tend to have panic attacks on airplanes and yes, I saw the news about the triple-7 that is somewhere at the bottom of the South China Sea southern Indian Ocean, I didn’t become a pilot. Perhaps, I would have been an excellent pilot as I’m very systematic and prefer to be in charge, but darn it, I just can’t get over that free fall back to earth. So, I went into the non-profit sector instead. I have many reasons to wonder why this man became a doctor, so here’s a rundown of how my appointment goes to justify my thoughts, and mind you that I have to drive about 45 minutes to get to his office with my less-than-stellar vision.
I arrive and have to fill out the same form that doesn’t really address any of my issues and is too hard to see and best of all, my doctor never even looks at it.
The medical assistant calls me back and then I get to sit and wait in a chair that kills my body in a boring exam room for up to 45 minutes, when I’d be more comfortable in the waiting room with padded chairs and a big plasma TV I can actually see. Per the wait, I was going to be 5 minutes late once due to an accident and called from my cell (these are things I should not do with my vision) and my appointment was cancelled and then I was slapped with a huge, no-show fee that didn’t go away until I called someone I knew in the office who took it off my bill.
The doctor finally comes into the exam room and asks how I am. How should I respond when I already wrote “the same” on the form? I’m also in more pain and beyond irritated by that point. So, I tell him that I’m hanging in there as he doesn’t really care what I say.
He doesn’t ask me about my EDS or how it affects me physically. He doesn’t offer to get involved with my physical therapy to make it more effective, and he writes my scripts for it. He doesn’t ask how my EDS affects me emotionally, even though I circled on the form that my anxiety has been worse since I saw him last. I really question how much he knows about EDS, even though he said he was familiar with it before I saw the geneticist a little over a year ago. He tends to speak in a hushed tone and when a medical student was with him once, I vaguely heard him say that people with EDS are tall. Sure, a subset of people with EDS have a Marfanoid habitus, but I’m not one of them—that was my maternal grandfather.
I basically try to think of something to say to make my appointment worthwhile, but what’s the point when you don’t have a doctor who cares or is interested? I’ve even asked the one medical assistant I like if he’d rather not have an EDS patient since I formerly saw his nurse and now he’s stuck with me, but she said that’s not the case. So, what is the case? And if you’re wondering why I don’t just go elsewhere, trust me that I’ve been everywhere in this town and this is as good as it gets.
I have my few prescriptions written and there’s a problem with them every time, but as my scleral lenses don’t fully correct my vision and other factors affect my near vision, I tend to need help reading them. This time, he wrote the dosage of one of my drugs wrong, so I would have run out early. His handwriting is awful even for a doctor and the assistant wasn’t sure what it said for a couple minutes, but then she rewrote it and had him sign it and he asked her what the problem was and she lied and said that the pharmacy would have trouble reading his handwriting which really bothered me, but I decided it was best to stay quiet about his mistake. On another prescription, the medication was crossed out and then rewritten, so I hope that won’t raise any flags.
And that was it! Nearly an hour of driving, who knows how long spent waiting to see him, five minutes or less accomplishing nothing in the exam room, and 15 minutes of wasted time and frustration dealing with his inability to write prescriptions. Then, I had to check out with the rude girl who feels so important behind her counter—the same girl who had informed me on the phone that my fabulous nurse had left the practice and slapped me with the no-show fee in the saga that I wrote about in this post.
So, why is he a doctor—especially for patients like me? I could easily walk into an exam room, naturally not look at people without my lenses in, not offer much help—although I feel I know much more than this one does—and then write poorly written scripts due to my vision just like him. He’s not much older than I am so the burn-out hasn’t started yet, not that I like that excuse because I knew some great, older doctors back home. And if you have a social phobia, then go into research, because those of us with chronic, life-altering diseases that will only get worse need empathetic doctors who actually care and can look us in the eye and put their hands on us in order to feel a pulled trapezius muscle, or tendinosis in a rotator cuff, or subluxated shoulder joints, or any of the other things my physical therapist does on a regular basis and all the doctors missed from day one.
If my PT could write my scripts and order the imaging I have to pull teeth to get, I’d just have her be my doctor because it takes a lot more than having the initials M.D. after your name to actually be one. No one deserves such sub par care when they’re sick and in pain and the worst thing is that I could be writing some semblance of this post about the majority of the doctors that I have and the hundred I saw before them.
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.”
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.
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.