My left eye, as the result of 2 procedures, is numb and has a problem closing because of the facial paralysis. In 1979 the eye had to be sewn shut (called a tarsorrharphy) because it was not able to keep itself lubricated. I was told that it was to be permanent, that the eye did not have the ability to keep itself well if it was opened.
After about 6 months they opened it halfway but that looked almost as bad.
After about 2 years I insisted it be 'taken down' (opened) completely because I could not tolerate the way it looked. My doctor objected but, to his great credit, agreed to do it anyway.
At first it seemed like maybe it had not been a good idea. I was back and forth to the ophthalmology clinic and eye hospital sometimes 1 - 2 times a month. After a while there were longer lulls between bouts. For the last few years it has done well and then decides for some unknown reason, to go 'bad', my term for turning bright red (the only way I know there is a problem) and is unable to recover, requiring a few more temporary tarsorrharphies, each one with the caveat, "you need to consider letting us close it again, permanently."
About 1 1/2 years, 2 years ago, it turned red and refused to get better. Even the one ophthalmologist who had sided with me for a very long time - to fight to keep it open - was now on the side of the rest: "It needs to be closed. Permanently"
I refused but agreed to a compromise. I would patch it at night and see if that helped.
I had always balked using a patch because of my fear of the pain. Even though I no longer had the triggered trigeminal pain the discomfort of touch, as a result of the 'phantom pain' (anaesthesia dolorosa) made the idea of taping the eye closed a frightful prospect. What was worse - the fear, even though for most of the time I had it taped I would be asleep anyway, or having the eye closed again? The fear of the latter took care of the threat of the former.
It worked for a while but then the eye went very "bad". Was my eye reacting to the tape I was using or just the regular problem? No way to know but, again, we were at the end of the line.
No, wait we were not. I started patching it with paper instead of just the tape. And again, it healed and stayed well, for a while, and then, again, it went bad. Once more it was not healing. Now what to do?
This is a long anecdote to get to my point. ((*_*))
I go to a university ophthalmology practice and see new residents every year but the same attendings. It had been a long time since a new physician was added to the group.
This day I saw the newest member. She heard the same story I had been telling for years. "You're patching it but it is still drying out? That is a problem." I somewhat begged. "Please, please don't say the T-word." I did not want to hear it again. I was still not ready to give in.
"Okay, no 't-word. Why don't you try this? You only tape the patch on the sides right? Maybe the eye is still opening under the patch. Let's have you also tape it in the middle which should force it to stay more closed."
I did. It did. It has been many months, not sure how many but a lot, since I last had to go to see them.
Was part of this a matter of familiarity breeds familiarity?
After a while it is hard to think outside of the box when it is the same problem being presented; and even the out of the box answers always backfired sooner or later.
I know my fear of taping, then patching, then adding this extra level of tape that meant more touching against the unpleasant numbness was a factor. I did not want to have to take pain meds shortly before going to bed "just" because of the tape, then 'just' because of the patch, then 'just' because of the extra tape.
It turned out I could tolerate it and honestly, if it turned out I could not, would having to take a med be worse then a surgically closed eye? The fear and fretting made all options seem and feel worse.
But, at the end of the day, it was a little thing, one more piece of tape, that, at least so far, has saved my eye, and me, from a fate worse then - well, worse then what I feared. And that is a very good thing.
My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.
Carol, I have been looking for you on the internet and glad to have found your blog. I , too, was hurt by MVD surgery. I suffered a stroke and developed anesthesia dolorosa. My whole life was turned upside down. I need some direction in the legal area. Could you please contact me at jodieknauss@aim.com. I would love to talk to you. I am from the pittsburgh, pa area.
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