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Testimony by K (France)
I am a 31 years old male. I suffered from severe
neuralgias (atypical i.e. bilateral and constant) on the trigeminal nerve
which started in 1989. It’s like having a toothache (but all over your face)
for five years; I can tell you that anyone would do anything to get
rid of that, including having doctors open your skull to cut the nerve...
I finally underwent a Gasser rhizotomy (put simply: nerve cut) on that nerve
(Vth facial or cranial nerve) in 1994.
The immediate consequences of that operation were:
neurodystrophy (huge lost of sensitivity) on my left face particularly,
dysesthesia (abnormal sensations such as electric current, etc), a maxillary
paresis – it made it very hard for me to speak at first - and dry eyes. At
that time, there were limited or no consequences on the right side despite
the rhizotomy performed on the trigeminal nerve on the right side as well
(which according to the surgeon this was a partial section on some layers of
the nerve).
A few days after the operation, I lost the epithelium on
my left eye and a neurotrophic keratitis ulcer evolved into a stromal ulcer
which finally “healed” in depth (necrosis of the superficial tissues). After
a biopsy of the ulcer in December 1994, it recovered despite a huge scar on
the surface of the eye. I lost a good deal of sight and I was no longer able
to read with that eye.
Anyway, as far as the left eye is concerned, there is a
very limited response to a cotton swab;
however on the inferior temporal part of the eye the cotton swab won’t make
the eye blink at all. Nevertheless, certain aspects of sensitivity remain:
hot or cold sensations, notably ocular burning after installation of a
pungent substance, etc. Pain is still present but not “immediate/
instantaneous” or reflex pain on the surface rather “delayed pain” or “more
in depth”. This probably means that my cornea is unlikely to defend itself
from any attack but I do feel the pain when the damage is done (ulcers,
etc…) and the nutriments the eye needs (currently under investigation – yet
at an embryonic level – but probably nerve growth factors, vitamins, or
others substance that enable regeneration) are lacking, etc.
During the following 9 years, I only had a few short
episodes of keratitis in the same area (particularly on the edges of the
scar). Besides those episodes, I had severe seasonal allergic reactions in
both eyes probably exacerbated by the lack of tears … or maybe the other way
around… but in any case; it seems obvious that dry eyes, meibomitis and
allergic episodes are intertwinned. During
those years, I was able to graduate from High School (got my law degree), I
worked and travelled a lot around the world. My work was actually very
demanding health-wise but particularly for the eyes: I took the plane very
frequently, worked on the computer all day long, and since it was
humanitarian work I went to countries where the words Health System are to
say the least a double misnomer…In one of them, the only hospital had no
medicine at all and scarcely had doctors in it. Nevertheless, I took no
constant medicine or drops and just slightly more precautions than
“normal” people.
However, since July 2003, both my eyes started to
suffer increasingly from severe dry eyes and ulcerations episodes are
increasingly more frequent. For the first time the right eye suffered from
minor peripheral ulcerations. Along with this I had episodes of RCE
(recurrent corneal erosion), filamentary keratitis, marginal ulcers, and of
course permanent red bloodshot inflamed eyes, etc, and of course pain… my
old “friend” and companion. I think I must have had a least 30 episodes of
ulcerations in less than 2 years. Believe me, that is too much to keep one’s
mind sane!
Although, it is possible that MGD might further
induce dry eyes through blepharitis (since rosacea was rule out), the bulk
of the problem and the cause seems to be lack of corneal sensitivity and
therefore lack of an appropriate response to any kind of aggression. Some
ophthalmologists (the top ones) have confirmed that lack of corneal
innervation is the cause whatever the problem my eye is facing at a given
time (immulogical, allergic, dryness, etc). The others are totally lost and
usually learn more than I do from the medical appointment! Dry eye and/or
MGD are known to occur is cases where there is lack of sensitivity.
My current treatment is based on doxycycline per os
200 mg, and topical antibiotics and Vitamin A ointment at night. Besides,
aggressive lachrymal supplementation of course of various types and brands
(very few are really innovative and most of them are very expensive). There
was some improvement but small ulcerations persist.
Ulcerations episodes are now more recurrent although
they are remain more superficial that in 1994.
It is impossible to describe the consequences of this
condition on my life (or maybe I’m not very good at it). All I can tell is
that whereas I used to feel comfortable and secure anywhere (going to
god-forsaken mined zones in Africa, etc, walking by myself on the streets of
Colombian cities, visited jungles in South America including the Amazons,
etc…), I am now afraid to step out of my home especially is the weather is
dry and hot. And when I get out, it’s sounds like a very perilous
expedition. .. And it is: I often return with an additional
problem in my eyes (or even an
ulcer). I guess one does not fully understand what
living with a constant threat means before experiencing it for real. Live
becomes a nightmare from which you do not wake up except to realize that
that you are no longer leading a real life. You become socially and
professionally dead… useless…
For some reason, but probably because there isn’t much to
see without a slit lamp and an in-depth medical exam of one’s eye, people
think we complain for the sake of complaining. The fact is, that we no
longer stand the light of day, smoke, wind, dry air, heating equipments, air
conditioners, pollution, perfumes… so either we are disabled persons unfit
to live in modern society… or we’re just a bunch of asocial hypochondriacs!
The latter explanation seems to have the favour of most people, especially
because it’s the less demanding on their part. It’s intriguing to “see” that
people tend to choose the simplest explanation possible that will not call
their behaviours in question. The fact remains that most people I know in
similar situations, living with recurrent corneal erosions, constant pain
and photophobia, have lost their friends, jobs and no longer speak to some
of their relatives...What a hell of a coincidence!
Right? But for some reason, which is not yet clear
to me, severe ocular surface chronic pathologies are seldom regarded as
serious disabilities by society as whole, or by governmental and medical
institutions, ophthalmologists, etc. I used to work with seriously disabled
persons, I now regard myself as a very disabled person but I know that I am
not likely to be perceived as one in the near future. Unless,
ophthalmologist try to grasp the impact these diseases have on one’s quality
of life… someday. Well, I believe they should start by trying to imagine
what it is like to live with one’s eye patched for a week trying to recover
from an ulcer and having to use the other despite the pain, dryness the poor
sight and keep on switching eyes. All of this, while leading a normal
social and professional life! Still,
I’m sure there are more innovative solutions out there…
First
of all, I amazed by the way most (meaning:
not all of them but most of them) doctors treat us (something along the
lines of “don't be bothersome, go home and use your
drops”), they’re seldom aware of the real impact this has on our lives – if
so, do all of them really care?- (so far, in ten years of experience, I
only talked to four or five doctors who seemed to grasp the basic concepts
of what we are going through each day with our dry eyes and keratopathy in
its most various forms (such as ulcers, etc). Verfew are
aware of the new treatments available. Most
doctors (except for some dry eyes and cornea specialists) are insufficiently
informed about the consequences in terms of quality of life. I understand
that these pathologies are very frustrating for doctors because, honestly,
they cannot offer us satisfying treatments... in 2006.
But what could be more rewarding than making a real or even just a small
difference in someone’s life for the better. Many doctors give up too
easily and prefer treating “regular” cases. Of course the patient does not
have the liberty to give up…
However, I’d like to conclude these critics by saying
that I have met a wonderful and interesting minority of doctors who have
tried their best to help me and ready to try new treatments. I would just
like to mention a few from Bordeaux, Rouen and Bichat
& Quinze-Vingts in Paris. I
have just started a trial of scleral lenses plus
cyclosporine that seems to be very promising in
terms of improving my quality of life.
I am also amazed by the very few centres carrying out
research on ocular surface diseases, dystrophies or even very severe dry
eyes (although there are more good news there)… and I cannot stress on
sufficiently enough (pardon the pleonasm but it has its purpose) how few
people are active to change all this and notably those affected by these
conditions, how important it is for us to get all together and try to find
solutions (by finding the good contacts, by promoting research, by doing
advocacy work on our behalf; for instance, in terms of disabilities and
funding research, or simply to get some support to reduce the cost of our
medication). I know that some of us don’t know what to do, don’t think they
can find the time, etc…well, imagine that your doctors feel the same about
your case (and of course they are less likely to feel concerned by your own
problem)…what do you think will happen? So give it a try…
Please join any institution working on these
subjects you may find; please contact Keratos if you live in Europe in case
you’re interested in participating in a dry eyes-related
association…hopefully we'll all be working together for a better life for
ocular surface disease and dry eyes sufferers around the world.
Be sure that the problem won’t be solved by itself
unless you do something too. |
