Few want to read about someone else’s medical issues. (Unless, of course, you are growing a nose on your forehead.) I only blog about this because it may be useful to readers of my age cohort, not because I hope to connect with the my-doctor-doesn’t-understand-my-unusual-condition denizens on the internet.
In the medical industry, one’s left eye is called the OS, which stands for “ocula sinistra.” My eighth-grade Latin teacher, Lois Schreffler, taught us how the Latin word sinister (left) entered the English language — it seems that left-handed merchants were considered untrustworthy in Roman times, hence sinister.
So. My left eye, my OS, is no longer trustworthy. In a sinister physical process I do not fathom the evolutionary purpose thereof, the vitreous gel in my left eye began to contract (as it does in many people-of-age) and, as it detached from my retina, it failed to cleanly release its grip. Instead, the vitreous mass pulled on the layers of my retina, and fluid from leaking blood vessels filled the gaps between the separating layers. The resultant bubble of fluid in the retina of my left eye distorted my visual field.
In the images below, I try to represent what my left eye sees, compared to my right eye.
In this blog, I will share some of my experiences dealing with this problem and offer some takeaways at the end, should you ever see things this way.
I first noticed some dimness and distortion in the central visual field of my left eye over two years ago. At that time, the retina specialist I visited here in Asheville said I had vitreomacular adhesion (VMA) and idiopathic central serous retinopathy (CSR) — in other words, failure of the vitreous to detach from my retina, and retinal fluid of unknown cause. He told me to return if my vision got worse. I took his advice too literally. The problem didn’t seem to get worse, but neither did it ever fully go away. So I did not go back to the specialist until April of this year, after I noticed that my vision had degraded to the point where my left eye could not resolve newspaper type, with or without glasses.
At First Glance
My Asheville specialist now recommended that “we” take care of my VMA by injecting a recently-approved drug (Jetrea) into my eyeball — the drug is an enzyme that is supposed to liquefy the vitreous gel and so release its grip on the retina.
I had a few concerns about this. First, reviewing my eye scans, I wasn’t convinced that the vitreous was still attached to my retina, so this injection could be tackling a problem that no longer existed. Second, even if VMA was the problem, the success rate of the drug in doing what it is meant to do (eliminate vitreous adhesion) is only 26%. If the drug failed (at a cost of $4000 just for the drug), the next step would be surgical removal of the vitreous. So there was a 74% chance I would spend $4000 for a null result and then have to plunk down another $15000 or so for eye surgery. Third, one of the possible side effects of Jetrea is lens subluxation, i.e., the lens of your eye slips out of place. If that happens, your lens must be removed and replaced with an artificial lens. Finally, I failed to see how a shot of Jetrea would resolve the bubble of fluid distorting my visual field. My eye doctor never bothered to answer this. Instead, he handed me a pamphlet (and later claimed in my chart that he had discussed the treatment with me). Like the U.S. invasion of Iraq in 2003, the case for the Jetrea injection was not made. It seemed like a lot of risk for uncertain benefit, and so (unlike George W. Bush) I sought a second opinion.
A Second Look
Luckily (and it is surely a matter of luck) my wife happened to be a long-ago friend and former colleague of the spouse of one of the leading retina specialists in the country, who now practices at the Storm Eye Institute at Medical University of South Carolina (MUSC). Although we had not been in touch for twenty-some years, our specialist friend was glad to hear from us and agreed to take a look at my left eye. Charleston is only four hours away.
Our friend could not say why I had developed fluid in my retina, but his scans confirmed that I no longer had vitreous adhesion. So that $4000 injection of Jetrea recommended by my Asheville specialist would not only have been useless but would have exposed me to unnecessary risk.
The new tests showed several hot spots of vessel leakage, the probable source of the fluid distorting my vision. My specialist friend was focused (rightly so) on eliminating the fluid. As he told me, “The first thing is to get the geometry right.” I liked that.
He recommended a series of injections of another newly-approved drug, Eylea. Eylea is a chemotherapy drug whose intended action is to inhibit blood vessel growth and leakage. Based on the literature, my specialist friend recommended three injections to start with, each a month apart. He said that if I did not respond after three injections, I was unlikely to respond at all and we would have to consider other (unsaid) avenues. I agreed.
Sticker Shock
I was about to proceed with the first injection then and there when I asked, how much will this cost? Good thing I asked. To save on premiums, I have a high-deductible ($10,000 out-of-pocket before my insurance company pays) policy, so I had a stake in the number of zeroes involved. The MUSC staff whisked me down to their friendly financial coordinator, who informed me (a) that each injection could cost thousands of dollars and (b) I might be eligible for patient assistance, but I would have to fill out an application and wait a week or so to see what my co-pay would be. So I filled out the paperwork and put my first injection on hold until I heard from the patient assistance program ten days later.
Based on the adjusted gross income on our previous year’s tax return, I did qualify for a drug subsidy. The deductibles and subsidies are still being worked out (Blue Cross would have had me pay $3000 just for the Eylea if not for the subsidy) but I have been assured I will not have to pay the full amount for the drug. If you are in a similar position, you need to ask first and shoot later.
So far this year, I have had four visits related to my eye problem. In just these four visits, I am already within a few hundred dollars of my annual out-of-pocket limit. Incredible.
Shot Therapy
I went to my next appointment thinking, what could possibly be worse than having a shot into your eyeball? I had imagined a Twilight Zone scene where the needle approaches ever closer to my eye until the dripping point of the needle fills my field of vision and then, wham! Shooting stars, goop inside my eye squirting out like a water-filled balloon, and who knows what other horrors! Actually, the reality was rather tame. With repeated lidocaine numbing of the injection site (in the white of my eye to the left of my iris), I really did not see or feel what was going on save for some “waterfall” visual effects as the Eylea was being injected. The most uncomfortable part was the betadine disinfectant drops before the injection — those stung a little. I also needed a lot of eye rinses after the procedure to help prevent that “swimming pool eye” feeling from the iodine in the disinfectant.
So, on the scale of shot-in-the-eye vs drill-in-the-tooth, which I would I rather endure? Well, neither is pleasant but (thanks to the MUSC staff) I felt less anxiety about the shot in the eye. I know what to expect. The injection is not going to hit some nerve that suddenly sends you into agony. If you can’t feel pressure on your eyeball, you’re good to go. But with dental work, you never know what pain lies a millimeter away.
Seeing What Happens
After the first injection, it took a couple of days for the slight “bruised” feeling to go away and about a week for the bloodshot area in the white of my eye to disappear. Four weeks later, I returned for my second injection. I had not noticed any improvement in my vision in that time, but the eye scan did show a significant reduction in my retinal fluid (see the cross-section scans of the back of my eye, below):
The fact that Eylea reduced the volume of fluid was a confirmation that leaky blood vessels contributed to my problem. Now it’s a matter of whether my vision improves accordingly. My specialist friend tells me it can take months for the photoreceptor cells in the retina to realign, so I guess I will have to be patient. I will also need regular OCT scans (quick and painless — but not free) to see if fluid has returned and maintenance shots are needed.
So there’s some hope here, but time will tell whether my vision improves or simply gets no worse than when I began treatment.
To See You Off…
To close, here are those takeaways I promised, based on my experience to date:
• Don’t wait (as I did) to see an eye specialist if you notice something odd with your vision. I have seen studies suggesting that a separation of the layers of your retina can lead to atrophy of your photoreceptors within a matter of months. In the past, eye doctors would usually ask you to wait a few months to see if the fluid goes away spontaneously (as it often does). But doctors didn’t have the drugs (or the data) at their disposal even two years ago, when I was first diagnosed, that they have now. Don’t be complacent and starve your rods and cones to death. (My left eye has already lost some of its green sensitivity.)
• Nearsighted people like me are more likely to experience vitreous detachment as they age, perhaps because of the elongated shape of their eyeballs.
• Risk factors for central serous retinopathy (CSR) include being male, a smoker, a steroid user, and a poor sleeper. I used to smoke. I still am a male. And I wish I slept better.
• Don’t agree to any procedure the same day you are diagnosed. Go home and read about your diagnosis and about the drugs your doctor proposes to treat it. Especially note the possible side effects. You may decide to do as I did and get a second opinion from another practice. Don’t worry about protocol, just do it.
• Ask about cost. Some drugs are less expensive than others and may be adequate to treat the problem at hand. The Hippocratic Oath is (at times) interpreted as calling for doctors to select treatments based on effectiveness, not their cost, but that doesn’t prevent you from pressing the issue of cost vs. benefit. Before you agree to any injection or procedure, you should read about Eylea, Avastin, Lucentis, Jetrea, photodynamic therapy, and other treatment alternatives.
• Be aware of the timing of any injections or procedures. For example, the stated regimen for some injections is monthly. Not every four weeks, but monthly. Insurance companies may refuse to pay for your injection if it is early according to their timetable, even if only by a couple of days.
• I am increasingly of the opinion that, for important medical issues, you should be ready to travel to large research-based hospitals. Not to denigrate doctors who choose to practice in smaller communities, but “Buy Local” is good advice when it comes to honey, string beans, art and tomatoes.
• Finally, my case is my own. Everyone is different and no one should apply the specifics of my problem to their own situation.
I hope none of my friends will need to pay heed to this. Long may you see.*
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