Download My father has been diagnosed with severe dry eye

Severe Dry Eye Patient, Male:
This has come to me via the Dry Eye Institute web site. This patient has never
undergone refractive surgery. Suddenly, nine months ago, he was just hit with a
severe case of what seems to be keratoconjunctivitis sicca. I think you all would be
interested in the saga of what such a patient has to go through in the latter yars of his
life. I am quoting from her daughter’s e-mails:
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“My father has been diagnosed with severe dry eye. It has completely
devastated his life. He cannot go outside or even watch television. He has
been to 3 specialist in our area. The doctor he is seeing now has stated
his diagnosis is severe and one of the worst cases he has seen. They have
been putting a contact in his eye to act as a bandage. The doctor has also
stated that in a few weeks he will be looking at sewing his eye shut for a
few months. My father’s cornea is severely damaged from this condition.
He is in such bad pain, he has become depressed. I need some advice and
some help.
Is there anything, any procedure or new surgery of any kind that he can
get to help this situation. Please advise. We will go wherever we need to
get some help. Money and time are not an issue. We will go wherever
needed. He has had this for 7 months now and is becoming very
depressed. My father is everything to me and I need some help or
answers to some questions. We have tried everything and have done
everything the doctors have said. We have bought drops, humidifiers, and
tried everything we have been told to try. Please get back with me as my
father is in much need of an expert in this field and some help. Thank you
for your time.
Dr. Holly:
I spoke with my fathers 3rd eye specialist today and this is what I
learned:
Started treatment with this doctor 1/23/04
At his first office visit he had no tear film
Diagnosed with SPK and had Trace E dema, Cataracts
Types of treatments: artificial tears, plugs, cauterized his left lower lid,
bandage contacts
They said that the next step is - Tarsorraphy (sewing his eye shut for
three months)
You asked me to find out a few questions about his treatment:
1. What shape is his corneal epithelium in ? (ROUGH)
2. Rose Bengal?-They said they do not usually do that in their office and
that they have not tried that test on my father.
3. Schirmer test results?- They said they do not do that in their office.
4.What is his tear film break up time?- They said they haven't checked
that
Medications currently using- Lotemax- 3times a day in both eyes
Bandage contacts(left eye only), Artificial tears (Bion) he
is using the drops all day long, 2 humidifiers, very large
dark sunglasses for use in the house
Thank you Dr. Holly,
Dialogue between the daughter (brown) and me:
It is surprising that they would do cauterization without doing Schirmer. Does he have
tearing in the eye they did cauterization? I don't know. Does that mean moisture or any
tears. I know he has no tears and moisture at the present time.
It is probably illegal for me to give your father medical advice, especially contrary to the
advice of his own physician (or is it an optometrist?) Optometrist- Dr. X.Y.
So I will just talk about generalities and you have to apply the information you learn to
his particular problem. Thank you!
The eye cannot survive without some tear film even if it is temporary (short tear film
break-up time). Eyes with zero break-up time may have already started to keratinize.
What does Keratinize mean. Maybe they have and this doctor isn’t treating or seeing it.
My fear is that they haven't done a lot of things they should have checked already.
Maybe he has been given so many different treatments that his eyes are suffering from
it.
Lotemax as any topical steroid has two major side effects; cataract formation and
glaucoma (increased intraocular pressure). Is this what is causing all of the pressure
and pain in the left side of his face. Just unbearable pain.per se?
No eye drop, not even even Bion (which is unpreserved) should be used too frequently
(e.g. every 5-10 minutes or even every 30 minutes for prolonged periods of time) as it
will leach the surface and cause chemical keratitis manifested in form of a rough
epithelial surface (epitheliopathy). He has been using the drops every 5-10 minutes
daily for approx 8 months. What do I do?
No ointment should ever be used! Meaning an antibiotic? They gave him that in the past
too. It was an antibiotic. They said just in case he had an infection it would get that out
of the way.
Many dry eye patients have photophobia. Dark glasses help that. Goggles are also
used with success to maintain a humid ambience in the eye. Where can I get the best
goggles for him?.
Any type of surgery is ill-advised in a dry eye, albeit some doctors even do corneal
transplant in severe dry eyes, which invariably fail (did you see the fate and saga
of Mrs. Yu in the attachment?) I read the article and agree that I don't belive it is worth a
try.
Even in main stream dry eye management controversies exist in the area of diagnostic
techniques and treatment modalities. This is unfortunate but a fact of life. Please help
me find the best doctor that would work together with you in the treatment and diagnosis
for my father.
One more thing I could do. To put your father's problems on the
www.surgicaleyes.com bulletin board anonymously. There apt to be a lot of response
both from doctors and patients (you could do search on the BB e.g "Dr. Holly". Do you
want me to do that? Yes that would be great. What kind of information would I be
provided with. Support or just information on treatments?
If I had your father's condition I would try Dakrina 5-6 times a day, up to 10 times a day
initially. I would stop dousing with any eye drops. Would wean off of Lotemax. In eyes
with bandage lens, perhaps Dwelle would be slightly more advisable, so vitamin A
would not accumulate in the bandage lens (which is a hydrogel lens). Eventually as the
eye heal I would get rid of the bandage lens also. He has been wearing the contact
bandage for approx 20 days. They took it out and then the same day he was in so much
pain I drove him back to the doctors office and they put it back in. They said it was a
regular contact lens??? Is this okay to use.?
I would not have any more cauterization, either until his tear secretion is better
investigated. One usually use temporary plugs because they are reversible (many
patients end up with epiphora upon plugging all four puncta). But in very severe dry
eyes at least two occasionally four puncta could have trial plugs just to see what would
happen. They have been trying the plugs. First small ones and then large ones. They
started to fall out and caused him severe pain. So they took them out.
Both Dakrina and Dwelle would help with edema especially microcystic edema
manifested as rough epithelium. I assume that your father's eyes have not started to
keratinize yet. Edema is swelling right?. So is this what is causing all of the pain? He
eats Aleeve like candy and he wants so much for the pain to stop. He is becoming
depressed and not like himself. The left eye is so much worse off than the right eye. He
says on a scale from 1-10 that the pain is over 10. He says he feels like crying but he
can't because there aren’t any tears.
Query: what triggered your father's dry eye nine months ago? We have no idea. He just
started having dry, burning eyes. The doctors just said he would have to use drops and
have to live with it. And it escalated from there.
Soon a small batch of HELURAN will be made by the compounding pharmacy
for severe cases of KCS (keratoconjunctivitis sicca) What is this??? and for
patients who also have severe discomfort and/or ulcerating epithelium. Do you think my
dad has this?? This would be available for such patients free of charge provided their
physician would write a prescription. What do I ask for??? What if the doctor says no
way??? The drug is experimental but quite safe. It has been prescribed for patients
with the diagnosis above and also for patients with traumatized eyes. One surprising
effects of these drops were diminishing pain and discomfort as well as rapid reversal of
ulcerating epithelium. Is this the same as edema? The mechanism of the analgesic
properties is not known but it is traced back to the collagenase enzyme inhibitor (CEI)
which inhibits this enzyme (secreted by injured epithelial cells) from dissolving the
corneal stroma during ulcer formation. CEI is safe enough so it can be used at present
intravenously. In topical use it is imminently safe an efficacious.
I will keep you informed on the status of HELURAN as I will others in the same
boat. And I will do my best to make it available for your father if he wants it. Let
me know!. Yes we want to try it. Would that mean that he would need to stop everything
else and tell the doctor he is currently with that he will be taking it? How would that
work? In each case I would get in touch with the doctor and explain to him/her about the
eye drop. Could you talk with the doctor? Is this an option or do I talk with him about
this? .
But until then, Dakrina and/or Dwelle is his best bet possibly later interdicted
with RedKote. When can he get this and how would we use this and explain to his
current doctor?
If you want to know more about these drops, read polymers and vitamins in the
treatment of ocular surface disease. in the Dakryon attachment I sent you yesterday
If you decide to do that I would like to follow your father's progress closely. This
would take up some of your time e-mailing me of his progress and symptoms.
But it is important. He should try to solve this problem without tarrsoraphy.
Dr. Holly I wanted to tell you a little about my father and I. She did and it just
about broke my heart.
Good evening Dr. Holly.
I went home this evening only to find my father in more pain and sitting in
the dark where he had been all day. I waited ‘til the evening to see if he
wanted to go for ice cream. I thought that due to the evening light he
wouldn't hurt as bad. I was wrong. He always regrets leaving the
confinement of his home. He is in too much pain.
What do I do now? Can you see him if we visit you in Texas?
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The answer unfortunately is No. I would not be much use to anyone in prison.
One feels so helpless. I started to play with the thought to find an eye care
professional nearby to team-up with. I could teach him how to treat dry eye patients
and would be present as a consultant at least initially. I do not even know how legal
that is. But I am getting request like that almost every week. The previous one, just a
few days ago, was from the Dominican Republic.
Well, if anyone from the other doctors or member want to contribute, I would
welcome any advice. Tron, she asked me about goggles!. I know you are an expert. I
will forward any advice to them.
Sorry, I just had to get this off my chest. BTW, my daughter is trying a new
medication tonight for fibromyalgia. I hope it works better than the other twelve she
tried.
Dr. Holly
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