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Testimonial
Neil (USA)
[Message
from Keratos: since we don't have a category on iatrogenic dry eye yet,
we have posted this testimonial here. however, bellow you'll read an
obvious case of preservative-induced dryness and OSD]
I came to My Doctor in 1998 WITH a
hypothesis for what was causing me years of chronic, severe eye pain: (ciliary or)
accommodative spasm -- a charley horse of the focusing muscles of my eyes. Based on
his exam, and review of my lengthy chart, he said we'd "treat it empirically,"
prescribing nightly use of "cycloplegic" (dilating) eye drops. Some
months later, one day I woke up with significantly
improved vision AND a dramatic reduction in pain. My diagnosis was
correct.
In addition, he performed my third strabismus surgery to align turned
eyes. This was contributing to the problem. I was then told to stay on the
drops, every other night, as "maintenance."
Once "fixed," I went immediately looking for work, since I had been
without work for five years. I took various temp jobs, the last of which resulted
in a permanent position with an e-commerce company.
But the workload was intense ... and pure paperwork and computers--the
most difficult thing for my weak eyes ... and within months ... the spasm
was returning. My doctor said I should switch to nightly use of the
cycloplegics. This was enough for a while, but ... somewhere in that first year back
to work, I begin to suffer severe stinging, burning, and dryness in my eyes.
I complained of this to my doctor who referred me to the clinic's
oculoplastic surgeon, who said, in effect, "Yes, you have very dry eyes." He
recommended plugging my lower "puncta" (tear drains). This offered minor help, but
the dry eye problem became steadily worse. He then recommended upper puncta
plugs. Somewhere in the early stages of the dry eye complaints, my doctor
prescribed a course of Restasis (ophthalmic cyclosporine) and something called
Lacriserts.
He may have prescribed other treatments for the dry eye pain, but I
don't recall. None of these treatments had any positive effects. He never
said, "I wonder if it's the drops."
Meanwhile, the demands of my 80+ hour a week, computer based job were
killing my eyes. My doctor prescribed stronger cycloplegic agents to keep the
spasm at bay. Simultaneously, I continued to suffer ever-worsening dry eye
burning, stinging, and pain. The oculoplastic surgeon recommended punctal
cautery: surgical "welding closed" of the tear drains. We did first the lowers,
then the uppers. This brought a tiny measure of incremental relief, but ...
very soon, the problems got worse.
Other docs were looking at me for a potential LASIK (or similar)
surgery, but ... based on my worsening dry eye symptoms, I never proceeded.
Refractive surgery is KNOWN to induce, or aggravate dry eye ... and I was entirely risk-averse ... especially since I had NO CLUE what was making the dry
eye so severe.
Again ... somewhere in there ... we're probably in 2004 by now --
nearly four years after starting work and nearly six years after starting the
cycloplegic drops ... the dry eye problem continued to get worse.
My doctor prescribed Atropine--the strongest cycloplegic drug
available. This helped the cramping issues, but seemed to make the 'surface' pain
worse. Based on MY cursory review of literature, it seemed that Atropine had a
"bi-phasic half life," so I e-mailed my doctor that I would like to begin using it
twice a day. He "signed off" on that.
Fast forward a bit to August of '04. The glare and fatigue from being permanently dilated and trying to read is brutalizing me, and the dry
eye pain is nearly crippling. I'm soliciting the leading experts in the world
for opinions on my case. Based on recommendations from my doctor, I seek
out Melvin Rubin, retired ophthalmologist and guru among eye docs.
In August 2004, Dr. Rubin told me--in addition to other things--to STOP
using cycloplegics immediately ... that they are NOT meant for long term use
... and that the "preservatives in them can damage the corneas." I stopped
using them immediately, having NO desire to compromise the health of my eye (but
assuming I was lucky and hadn't ALREADY DONE any damage. I didn't make the
connection between Dr. Rubin's comments and my current situation).
So ... with the underlying accommodative issues no longer manageable, I
try to manage, but unsuccessfully, my job. I am declared permanently disabled
... through age 65.
I try to switch to Plan B: live a life outside--biking, hiking, skiing,
travel, running, windsurfing, etc.,--NO reading and NO computers--but ... very
quickly, I realize that EVERYTHING I do hurts. Being in moving air, heated
areas, air conditioning, ventilated buildings, the grocery store, a car with a/c
on, sun, wind, sand, hiking, biking, rollerblading, dust .... EVERYTHING hurts
... and my vision is far more variable then ever before. We were in CONTRACT to
buy a home in Fort Collins, Colorado, but--at the last minute--I decided that I
could NOT live there because of the low humidity and apparent inability to manage
the ocular surface issues.
While looking to my doctor for answers and seeking medical advice on
what's happening (trip to Denver for evaluation for Autoimmune diseases,
internal medicine, endocrinology, infectious disease, etc., etc.), I happen to
remember Dr. Rubin's comments about the preservatives damaging the cornea. I
look in the medical literature and it is FULL of documentation that--indeed--cycloplegics themselves, AND, more particularly, the
Benzalkonium Chloride used to preserve many eyedrops ARE KNOWN TO cause dry eye and
severe corneal damage. This has been well documented for several decades and
became immediately apparent in two minutes searching on PubMed.
My doctor balked at the theory, but referred me to the clinics corneal specialist (whom I'd seen before). The corneal specialist admitted to
having no expertise on the effects of BAK, but suggested I go to a leading
researcher for biopsy and further pathologic/histopathologic studies. He thought of a
guy in Texas, whose name =I= knew: Steve Pflugfelder, but ...
I determined who the foremost authority on the subject was:
Pr. Christophe
Baudouin, in Hopital Quinze-Vingts, in Paris, France.
Reaching out to him, he said that--based on my history and description of symptoms, it sounded like
a clear-cut case of BAK-induced toxicity. I asked if I could be seen in
his clinic and arranged to do so. Baudouin examined me twice--once in July and once in
September--performing tear analysis and confocal microscopy, primarily. Based on everything he
saw, he concluded that:
1) I suffer from "corneal hyperesthesia" due to an abnormally large
number of hyperactive corneal nerve endings;
2) That the apparatus that PRODUCE the three tear components (meibum,
aqueous tears, and mucin) are all damaged;
3) That my eyes show the pathological markers of infection that is non-responsive to trials of antibiotics;
4) That my eyes show the pathological markers of acute inflammation
that is non-responsive to trials of preservative-free non-steroidal
anti-inflammatory drops;
5) That my eyes are clinically "severely dry;"
6) That it is his opinion that ALL of this was the result of long-term
use of cycloplegic drugs, primarily the preservative, Benzalkonium Chloride,
and that this damage is WELL documented in the literature;
He has no further treatment recommendations at this time, and deemed
the damage "irreparable." He suggests that I avoid heating, air conditioning,
dirt, dust, dry places, high places, etc. In short, he has no idea where and how I
will make a life .... ESPECIALLY considering the severity of the addition of
the underlying problems for which the drops were ORIGINALLY prescribed.
At this point, my doctor is recommending additional specialists (Ocular Immunologist, Harvard) and that I give strong consideration to the
following surgeries:
-clear lens extraction/intraocular lens implantation
-conjunctival transplant
-corneal transplant
-stem cell transplant
-additional strabismus surgery, perhaps every few years, to maintain
alignment
All of these surgeries carry inherent risks, INCLUDING the likelihood
of exacerbating already critically dry eyes. None of them will fix the
dry eye problems OR the "corneal hyperesthesia" that Baudouin thinks might be
the most damning insult of all. Some of them--though hugely compelling to me,
at this point--are pretty well contraindicated BECAUSE OF long-term exposure to
BAK.
Dr. Baudouin is of the opinion that the risks of ANY further surgery
outweigh the potential benefits.
And now I'm screwed.
My underlying accommodative and binocular function problems were
declared disabling to begin with. And now this. I don't HAVE a Plan C. I
can't stay inside, and I can't stay outside. I've got nowhere to be where I'll be
okay. I suffer chronic pain, dizziness, fatigue, cramping and nausea from the
underlying issues--GREATLY exacerbated with any nearwork. Nearwork, for any
length of time, causes my eyes to "lock up" in a "pseudomyopic" state, AND alters
my eye alignment, causing double vision.
But the environmental issues may actually be WORSE: I'm highly light
sensitive, intolerant of wind, dust, air conditioning, and heating. Low humidity
(eg, airplanes, mountains) is brutally painful and medically risky. On top
of all of this, ocular surface diseases like mine INDUCE variable and blurred vision--the LAST thing that MY eyes need. It simply makes the
underlying issues worse. At this point, for example, I'm having great difficulty with
night driving and may have to stop entirely.
The ONLY additional known treatment that has been unreservedly
recommended to me at this point it the Boston Foundation for Sight Scleral Lens Device
(about $11,000 in total). I WILL be traveling to Boston in January to pursue
this option.
Since all of this has happened, I have been a patient at a Pain Clinic,
and am receiving ongoing treatment for depression. I cannot figure out any
way to make a LIFE at this point ... much less a living.
CONSUMERS: please avoid BAK-preserved drops where there is an
alternative.
HEALTH CARE PROFESSIONALS: please don't prescribe drops preserved with
BAK when there is an acceptable
alternative. If
there is NOT an acceptable alternative, please contact the pharmaceutical companies to urge them to create one
AND monitor your patients closely for signs of ocular surface damage or dry
eye syndrome.
PHARMACEUTICAL COMPANIES: please explore options for preservative-free ophthalmic medications.
Thank you,
Neil
California
USA
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