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Hello & Greetings - Chronic Dry eye/MGD journey for last 5 years

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  • Hello & Greetings - Chronic Dry eye/MGD journey for last 5 years

    Greetings everyone! First post here...have talked to some members privately and browsed this forum earlier but an introduction is due. Here is my long story:

    Am middle aged male of Asian Indian origin and work with computer all day. This has spolied my career and a huge drag on my daily life. Suffering with chronic Dry Eye/MGD/blepharitis/rosacea(facial) for last ~5 years. My dry eye nightmare started with a severe sinus infection which turned into eye infection back in the spring of 2007 (from abnormal pollen levels). Also, have lagophthalmos (nocturnal) and eye lid retraction. Morning after waking up, my eyes feel very dry. Have HypoThyroid and skin rash issues. Had Sinus surgery last year after lot of suffering and they are much better now. Have had evaluation for graves & sjogren's disease and basic allergy testing, but came out negative or insignificant.

    According to my local ophthalmologist, I currently have very marked meibomitis with 2.5-3+ impaction & inspissation. Last year had Blepharitis and granulomatous rosacea (in face - around eye brow and body). Have had punctal cautery performed on lower in both eyes in 2009. Loose lot of eye lashes esp. lower eyelids and they grow in odd directions (like growing back towards the eye)...had to do electrolysis treatment of left lower eyelid in 2010. Eye lid margins feel puffy and heavy; warm compresses help them. If I skip it for few days my discomfort increases; guess is : the effect do not last long or throughout the day.

    I was following regimen below for last for 10 months:

    a) Baby Shampoo eyelid scrubs
    b) Doxycycline 100mg 2 caps daily
    c) Warm/Hot eye compresses 2 times daily
    d) Lovaza 1G - 4 Caps (for last 1 year & 9 months)
    e) Refresh Celluvisc, Systane Balance and Blink Gel Tears eye drops
    f) Refresh PM eye ointment at bed time
    g) Tranquil eye goggle

    I saw another doctor from Duke Eye last month who thinks my MGs need some good workup as they are clogged and asked me to wait for LipiFlow system to become available as I already have punctal cautery performed on lower in both eyes and have already been following usual dry eye/MG rituals for last couple of years. He put me on Azasite last month. Also, warned me that IPL can cause skin pigmentation around the eye/face because of my Fitzpatrick type 4-5 skin.

    For last 1-2 month, eyes got very uncomfortable/blurry/tired when I am at computer....printed materials were better. Started having foreign body sensation, inner eyelid burning sensation, difficulty moving the eye ball (low lubrication) in them. Using more Tear drops did not make it better. Later last month, had to rush for a urgent checkup with my eye provider with this eye pain, burning, foreign body sensation, light sensitivity in my eyes. On examination the doctor said cornea is having erosion /pitting /abrasion to a great extent. The reason behind it being suspected to be 2-3 mm nocturnal lagophthalmos in both eyes and no other reason was given for inner eyelid burning. They suggested lid surgery -Tarsorrhaphy.They also treated me with plugs on the upper tear ducts as the lower ones are already cauterized. This condition can be very dangerous and makes one susceptible to corneal ulcer/infection. After all tear ducts were blocked, cornea has healed now. But excess tears is now overflowing giving blurry vision and doctor do not want to remove them.

    In spite of this excess tear, feel inner eyelid burning and foreign body sensation...this was not there earlier, I mean before last 1-2 month....before getting all ducts closed recently, this was terrible during that last 1-2 month and led to above cornea damage...previously with just my lower cauteries during last 2 years I never had it...after adding upper plugs last month, it improved but burning is still there; before last 2 months this was never the case. Adding tear drops on top of this tear overflow do not help much....only shutting the eyes closed make feel better. Any guess, what may be the possible reasons in my case???

    The skin around my eyes/eyelids are very sore and dark from this continuous warm compresses. Recently, developed rash/allergic reaction after one of the doctors asked me to use a cream in that area that can help dry eye. Now the rash has improved after using hydrocortisone cream and zyrtec. I tried taping my eyes shut with 3M gentle micropore paper tape, but the eyelid skin was in so bad state from rash/warm compress that left upper eyelid skin(2-3mm) got peeled...ouch!

    Got frustrated with my daily regimen, discomfort/disability and hopping from doctor to doctor with little relief/benefit and progression of this disease...therefore was desperate to try more docs(not necessarily better) or new procedures in hope of relief....but do not know they will make things any better. Can not imagine living with this hell for rest of my life and afraid that regular maintenance is not enough to keep this disease under control.

    I visited Dr. Toyos and Dr. Akpek's office earlier this month .

    Dr.T said my MGD problem can be rated at 8 out of 10 but TBUTs were not very bad. He performed 1st IPL (low energy setting) because of FP4 skin complexion. Asked me to discontinue mainstream regimen and asked me follow his regimen/protocol and said he can not go higher settings with IPL in my case.

    Dr.A said that I discontinue Azasite, Doxy and use Z pack(azithromycin) 5 day course for next 3 months. If the clogging do not improve, they plan to perform gland probing. She did not suspect any demodex mites from visual inspection and said that when she expressed glands, oil came out; but since they are clogged, the oil can not make it's way to the eye surface. They did not do any exotic tests on me.

    Couple of thing I have noticed is that: (a) these doctors offer fragmented treatment approaches...there is hardly anyone providing a comprehensive treatment...local provider is probably the better one...may be because of regular follow ups (b) another thing is - these doctors do have contradictory approach and not possible to follow a combination. Some of them think that it can be harmful or lessen the effectiveness of their treatment. Also, my local doctor refuses to treat me if I do not follow mainstream treatment that he prescribes. But am not getting much help from local doc to get the situation better, so, I want to try other treatments; for regular checkup and urgent needs I do need my local doctor. And out of all the doctors I have seen locally, current one is the best of the lot available locally for dry eye.

    My latest/changed regimen:

    a) Diluted baby shampoo/Ocusoft eyelid scrubs
    b) Z pack(azithromycin) 5 day course for next 3 months
    c) Warm/Hot eye compresses 2 times daily - discontinued because of rash/eyelid peel; but plan to start in another week
    d) Lovaza 1G - 4 Caps
    e) Oasis/Optive eye drops
    f) Refresh PM eye ointment/Genteal Gel at bed time
    g) Bromday drops - at bed time
    h) Tranquil eye goggle
    i) Humidifier near bed
    j) Natural/Herbal Supplements
    k) Raw turmeric & Triphala(anti-inflammatory)

    Apologize for the long post. Thanks for reading & Have a nice day!
    Last edited by shanku; 16-Sep-2011, 15:29.
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