The Many Faces of Moebius Syndrome!

A message from Marvin

I too have Moebius. I am 67, retired. I worked for the USAF as a civilian employee. I retired as a GS-15.

The reason I am writing is that several years ago, gravity won the battle and my lower eye lids started to sag so much that normal tears could not keep them moist enough. I went to the Cleveland Clinic and they fixed that problem.

Last year, my lower lip started to sag so much that my lower gum was exposed and, while it was embarrassing, the real problem is that I figured that eventually it would not do well being exposed like that. Back to the Cleveland Clinic where I was recommended to see Dr. Michael Fritz. He has developed a new technique that moves two little used jaw muscles (one on each side of the face) to the corner of your mouth. You are then able to close your mouth completely and also have somewhat normal movement on both
sides. It took one 5 hour operation to do both sides, which seems to be less than the "Smile" operation on the web site and doesn't involve any nerve removal or transplants. The recovery was not pain free, but not nearly as bad as I feared. I did not need pain medication after the second day - and really very little before that.

Just something to know.

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I have been lucky, my eyes did not bother me till I was in my late 50's. But about that time, my eyes started getting red and burning and tearing so badly I had difficulty reading and even driving at times. I found out that there are two types of tears, the regular (good) kind and the emergency kind the eyes produce when they are irritated. The second kind are used to wash the eye out and are not good enough to keep the eye properly moist and lubricated. Which means you can have the dry eye problems even when there are tears streaming down you face. In my case, the lower lids were drooping too much. That was corrected, but gravity never gives up :).

It turns out that the muscle relocation also tends to push up the lower eye lids too, which was a unexpected beneficial side effect.

I wish the procedure had been available 30 years ago -- and that I had know about it.

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