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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: ___________________________________________________________________ “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? _______________________________________________________ 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 _