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Old 12-21-2008, 04:52 AM   #4
sandwood sandwood is offline
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Join Date: Oct 2007
Location: Illinois
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Re: CPEO Part 3

Sarah,

I have had two levator resections on my right lid only. The first in 1983 didn't last more than a year. I had a second in 1991. The last surgery and recovery was difficult. I wasn't diagnosed with CPEO yet. I remember my eye not closing at night for several months so I really had to spread the cream in it to prevent drying. A severe complication with this type of surgery, especially for CPEO, is cornea drying and ulcers. Ophthalmoplegia prevents the eye from rolling up during sleep exposing the cornea to air. Also, the ophthalmologist said my surgery was like wrestling a bear; it took over three hours. I read the notes, he described the muscle as fatty and flimsy, not normal and he had to remove 9 mm. Possibly another reason why we are not good candidates. However, the repair did make an nice arch in the lid, cosmeticlly more normal and like the other lid. The ptosis had progressed but the arch is still there. Some people said they don't even notice something is wrong. Many normals squint. I would say there's probably a lot of ptosis repairs done on undiagnosed CPEOs, in other words, not knowing there is or documenting the mito. It's still hard to get diagnosed and ptosis usually proceeds the ophthalmoplegia. My lid is now affecting my field of vision. But I have so much scar tissue I don't think the LR would be wise. I've asked a very good neuro-opthal at Wash U for anything, a sling, or maybe just taking a little tuck of skin, something and he always declined. Now, I'm thinking about going somewhere else because I do need to see. To compensate for the droopy eyelid my forehead muscles strain, so now the right eyebrow is raised. I wear bangs to cover it up. I wish this could be prevented but since it wasn't fixed.

It is really hard to say what would be best for you, we are all a little different. I would suggest trying to find a neuro-ophthalogist who has experience with eye movement disorders. Familiar with CPEO may be asking too much in some areas.


Good luck,

Sandy

Last edited by Administrator; 03-25-2010 at 07:17 PM.