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Warning: My Dry Eye Story is not for the Squeamish :)

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  • Warning: My Dry Eye Story is not for the Squeamish :)

    Hello there everyone,

    My name is Michael and I am fairly new to the site. I thought I would go ahead and post the journey that I have trodden thus far, so here it goes... (sorry for the long post, but there is a lot to tell)

    My story actually begins when I was about 10 years old. I was outside playing on the back porch, and I decided, in my infinite wisdom, to grab a huge knife to cut a cardboard box. As you can imagine, as I was cutting towards myself, the knife slipped and I stabbed/nicked my right eye, about 2 inches away (towards my nose) from the pupil. I'd like to note here that all of my eye problems are pretty much only dealing with my right eye.

    This was before laser eye procedures were available, so they stitched it up and I spent a couple days in the hospital. The original procedure was quite successful, as I had little problems with my vision, and the only problem were the stitches that needed to stay in as well a 'bubble' (scar tissue) that developed in my iris, but all the doctors said was benign.

    I didnt have any eye problems until about 2.5 years ago, just about 15 years after the original injury.

    Others around me started noticing that the 'bubble' in my eye was growing, and one morning I woke up and realized that it was beginning to grow over my pupil and obstruct my vision. It was a depressing visit to the hospital, as the optometrist who looked at me told his resident assistant in training that "You need to look at this, you will never see this again."

    They referred me to a good opthalmologist here in my city, and he told me that the bubble had developed into a cyst that had its own blood flow, which is why it was growing. We had to do 3 separate laser procedures, with about six months between each one, before he could clear it all out.

    Unfortunately, the problems didn't end there. The cyst cause one-third of my iris to become attached to my lens (i believe that is called an iris adhesion), which apparently was causing me pain in the nerves of my iris. This caused the worst pain that I have ever felt in my life, and I have even experienced a kidney stone. The pain would strike 1 to 3 times per week, up to several hours at a time, and really felt someone had a knife plunged deep behind my eye. I began taking Vicodin, but often it did not help, and I frequently had to spend the day just lying in bed, wear an eye patch, tape it shut, and try to cope with absolutely debilitating pain. There was one day where I took 4 or 5 Vicodin in one day, with, literally, little to no relief.

    In order to remove the adhesion, I had to have my lens replaced, and so I had cataract surgery at the age of 25 (August 2011). This seemed to actually correct the problem, and I had about one week free of pain, which felt great. Unfortunately, the cataract surgery caused the stitches from the original surgery (when I was a kid) to begin coming out of my eye, a truly unique and unforseen side effect.

    I was still in pain, as the stitches were poking out and scratching the inside of my eyelid. When I came back in to the doctor and he saw them, he told me I could wait for a couple days and we could do pull them out under anesthesia, or he could do it right now - and I didn't want to wait. He put in what numbing drops he could (they didnt help) and he physically removed them with tweezers, while I gripped the armrests of the examination chair. It was fairly excruciating, and I almost told him to stop. He could only get one of them out the first time, so I actually had to go through this twice. This all happened in October 2011.

    Ever since that last event, I have been dealing with severe dry eyes. We didnt realize it at first, but my doctor was, understandably, frustrated that I was still getting pain after the stitches came out. He thought it could be additional iris adhesions that I have; he tried to remove them in another surgery in December 2011, but could not do it due to all of the scar tissue that has built up.

    It was about this time that all of these issues began affecting me mentally as well. I really wanted all of these issues to just be over, and seriously considered telling the doctor to remove my eye, or do it myself. The rational part of me and my family always kept me from doing this, but I will be honest and admit that the desire is/was there.

    It was only after seeing several other opthalmologists (including research doctors at my local university) that we figured out that it was severe dry eye that was causing the current pain. Indeed, a doctor put litmus paper in my right eye to test tear production, and it was bone-dry.

    We had lower punctal plugs put in, and I am also on Restasis to try to improve the tear production. I HAVE SEEN some improvements with the pain level and frequency, which has help me be a little more optimistic about the chances for getting better - my GOAL IS ZERO PAIN, and I know that this is achievable.

    BUT, right now, I am still am constantly putting in lubricant drops, ointments and other medications, including pain meds. If I don't the right eye will get so dry that it aches, right at the top of my eye, to the point that I cant even open it.

    Anyhow, that is my story, to this point. LOTS of trauma and other problems with my eye, BUT I know that there is a solution out there for me, its just that I havent found it yet, and I look forward to using this community as a resource to help!

    If anyone has any questions on what Ive tried or experienced, I would be happy to answer them. I will also list the current medications I am on below, in case you have any suggestions for me.

    Current Meds:
    *** Refresh Drops and/or TheraTears drops
    *** Refresh Nightime Ointment (I sometimes use the ointment during the day)

    *** Restasis 2x per day (I have been on this for about 3 months - sometimes I feel that it provides relief, other days it doesnt)
    *** I am also currently trying Muro 128 ointment (3-4x per day) - which seems to give longer relief than anything else, though its only a couple hours at most

    *** Recently, we tried Lotemax ointment, but it didnt seem to help that much

    Thanks for taking the time to read/comment.

  • #2
    Like you I also had the urge at one time to remove my own eye problem with a kitchen knife, and had to stop holding sharp knives for that reason. Its the inner-anger and torment we all undergo. Please persevere with the Restasis, its slow acting and takes 3 months to reduce the 'inflammation and pain'. Inflamation is a sign of infection - so you may need a eye-swab to identify the germ involved. In my case 'pus' turned up in the swab and it was soon cured with Pennicillan. Cures are not permanent. We feel betters for months then it returns, the only blessing of sorts is when it returns it seems to not be as painful or vicious as before.

    I view eye-sockets as being similar to an honey beehive, with 3 to 4 germs trying to set up home inside it. Some are flies, some wasps, others bees, and they fight it out to colonise our body orifices and eye-areas. Your living in the Sunshiine State can't help your condition. I need to avoid the sun myself. I feel for you. Your zero score / dry-eye result means tear gland problems, you need to discuss with some urgency having the 2 x TOP EYE LID tear ducts cauterised ASAP. Closing these makes a great difference, your doctor with good reason will not close the lower 2 x eyelid ducts.

    The only other advice I can give which worked for me is: To take Vitamin Zinc tablets daily, [this was a newspaper medical column tip I read] if I take 2 x Zincs it works as good or better that many pain tabs. Could I ask you to look into being prescribed Nortryptyline tablets, my wife takes these for severe arthritis pain she's in, and once feeling low I tried some. On a score of 1-10 they scored 8+. Please Google Nortyptiline for further information and makers precautionary advice. For safety please mention these to your Doctor and ask him what he thinks first. I found just one 10 mg tablet worked for me, your allowed 150 mg a day, so 1 x low dose 10mg seems reasonable. Good Luck and Welcome. I'm a newbie myself. Best wishes winging your way.
    Last edited by AprilShowers; 01-May-2012, 04:48.


    • #3
      Hi AprilShowers,

      Thank you for the ideas. I will try the Zinc and see if it helps. I also plan on trying some goggles to see if that helps with the night time dryness.

      As far as anti-depressants, I am currently taking Trazodone. I think it is milder than things like nortryptyline, though it seems to help ok with the rapid emotional reactions (quickly getting really angry or sad) that tend to develop when one has chronic pain/dry eye. It can make you drowsy, so it doubles as a sleep aid - I take at bedtime

      However, anti-depressants are know to help with chronic pain as well, so I will discuss with my doctors whether they think that stronger medication in this field might help.

      As far as the cauterization, I've decided to see if I can get improvements with the plugs and by taking RESTASIS first (PLUGS are in my LOWER DUCTS). I am cautious about doing the cauterization because:

      a) it is permanent, and I was warned that if your tear production does get better in the future it can cause negative side effects

      b) I have had 6 outpatient surgeries with full anesthesia in the last few years, and am worried about continuing to go under anesthesia AGAIN, being as young as I am (every time you do this there is some risk, and the more you go through it, the more dangerous it becomes)

      Thank you again for your thoughts!


      • #4
        I would definitely hold off on the cauterization and see how things go. You should not even consider cauterization unless advised to do so by an eye doctor.


        • #5
          Originally posted by michaelmozart86 View Post
          As far as anti-depressants, I am currently taking Trazodone
          Trazodone made my eyes worse, I would like to think it was b/c it made me sleepy; but as soon as I took it and it started to work, my eyes would become bloodshot.


          • #6
            Originally posted by robster View Post
            I would definitely hold off on the cauterization and see how things go. You should not even consider cauterization unless advised to do so by an eye doctor.
            I've had one doctor recommend doing the cauterization, and one recommend against it.

            But I agree with you robster, I want to try everything available before resorting to surgery.

            I havent noticed any difference when I take the Trazadone, vivian, but I will definitely keep your experience in mind.


            • #7
              Miichael, What you learn through experience, known in the medical field as trial and error, is everyone says wait, do nothing, be patient, be cautious, lets try this and if it doesn't work then we'll go to plan B, and no PATIENT ever says "You must be joking", "are you mad, crazy, qualified, an expert or a quack"! Patients always go along with whatever our Phd Witch Doctors advise. By following their insane advice we suffer pain and discomfort for another 5 to 10 years 'because maybe they think sufferings good for us". I want some Doctor to stand up and tell MGD patients "We have'nt got a clue how to treat you". So, in view of this get the two top ducts cauterised, it will do you lot of good and save wasting your time living in silent hope for 5 years. You said: I've had one doctor recommend doing the cauterization, and one recommend against it. Doesn't this get your blood boiling, doesn't it ring warning bells, prove me wrong by going to 6 doctors and obtaining 6 different treatment plans. All things considered you'd be better chucking a penny in the air and guessing heads and tails for which option to choose.


              • #8

                I just read through your story. What an ordeal. My goodness.

                I am not at all surprised that you had thoughts of having the eye removed. I've worked with a lot of acoustic neuroma patients... After AN surgery are advised that they will have extreme dry eye and some of them are given that option. I've known people who opted to keep the eye and then regretted it because the pain levels were so high. When pain gets that bad, one will do almost anything for relief. The eyes (corneas specifically) have more densely packed nerves than any other body tissue and so are capable of producing more pain.

                Some thoughts/suggestions:

                Since you've had some improvement with the lower plug, you MIGHT want to consider upper plug too.

                Almost everything you've posted about treatment has been about drops. I'd encourage you to look further. There's only so much drops can do.

                Moisture chamber glasses could be a good next step for you. Two reasons: Since that eye sounds extremely dry, it can help reduce evaporative loss, but at least as importantly, it eliminates the air movements that break up a low quantity & quality tear film. It's a drum I'm constantly beating here... In my experience moisture chambers are the most frequently effective non drug tool to help get pain under control.

                Give me a call if I could help you with brainstorming about additional options.

                AprilShowers... I'm trying to be a good sport and laugh at your jokes, but honestly, when people are in a really hard place, telling them over and over what idiots all doctors are just isn't that helpful.
                Rebecca Petris
                The Dry Eye Zone


                • #9

                  Your story is such a painful one - I applaud you that you keep on trying new options, and that you keep hanging in there. I think depression is a condition which many of us deal with, I definitely do. For me, the antidepressants and other medications which I must take definitely contribute to my dry eye disease, DED. But there is no way I can avoid taking them.

                  Also, I had a botched neurosurgery which caused extensive nerve damage to my L eye, resulting in severe DED, by severely decreased secretion by lacrimal glands, and causing corneal pain as well. I have been wearing moisture chamber glasses all waking hrs for a year, and they are an incredible help. The only time I don't wear them is when driving, because the inserts block my peripheral vision, making wearing them highly dangerous when driving. They do an excellent job keeping artificial tears, and other drops on the eye for awhile. I can wear them without adding additional drops for probably 2 hrs, unless I am doing close work like reading or computer work.

                  Muro 128 is prescribed 4x/d and unfortunately I am again on Restasis, now 4x/d as well (it didn't work last time 2x/d). In between I add artificial tears. And now I have a bandage contact lens (BCL) on my left eye 24/7 x 2 weeks so far, must wear another 3 wks because I had pretty severe RCEs in that eye.

                  Anyhow, I agree that to keep hopeful is a good thing. We never know what new options might be available down the line. And you are young, so you have much more chance that something new which works will be developed in your lifetime. I am working towards getting sclerals, and I am hoping that they will be very helpful in treating my DED. So I wish you well. Let us know how you're doing, everyone here really cares.



                  • #10
                    Hello everyone,

                    Sorry I haven't answered in a while I have been busy with work. Thank you very much for all of your suggestions and I appreciate your interest in helping me. I went back and saw my primary ophthalmologist and he placed in the upper plugs today. We are trying Lotemax drops as well as Muro and in the mental health department we are trying Cymbalta, since some patients have reported that it has helped with neuropathic pain similar to mine. These new treatments, if they are going to work, should work in the next few days. I will update again to let you know how they work out.

                    Thank you all for your support and ideas. It is very refreshing.


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