There is plenty of good information about congenital ptosis out there. I know a lot of our concerns were right before and after surgery. There are also the ongoing concerns, including vision and head posture.
This article is in academic-ese, but raises a good point about the difficulty of keeping both eyes working evenly--even after surgery. Reading between the lines, it's telling you that the other eye may have problems (this is something our surgeon never talked much about) after surgery to correct congenital ptsosis.
Here is a very interesting video that discusses congenital ptosis, including birth trauma as a cause.
Again, I put up this page to engage other parents in discussion, so if you come across this, please do leave a comment about your experiences.
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Hi there, I stumbled across your blog when I saw Forest Whitaker on a TV show tonight, and I noticed his eye for the first time, so I googled it. And there I discovered "ptosis". I was shocked. Why? Because I'm 35 and I think this is what I have. I never knew there was a name for it, or that even some celebrties had it! I wonder how common it was when I was born. I'm sure surgery was never discussed with my parents. Anyways, being 35, I am used to the way I look (though I had to deal with a lot of teasing when I was little). My eyelid never got in the way of seeing things, but there is a muscle connected to my jaw. When I chew, the eyelid goes up and down. It's not as pronounced now as it was when I was younger. Have you heard of this before?
ReplyDeleteWell, I'm going to google some more.
Best wishes for your son's good health.
elle
Elle, I have to tell you the surgery for you would be quite simple. They'd probably just go in and tighten the eyelid muscle. The surgery is not just done to children--that's just my interest because of my son.
ReplyDeleteI've never heard of the jaw thing! You should talk to an opthamologist...
My son now has glasses and is doing great. We have an appointment coming up this month and will get some sort of update then on when his big surgery will be.
My daughter was born with Ptosis. One eye is 1mm lower than the other. She has not had any surgery yet. She is 10 years old. I am investigating surgeons but am having trouble discerning just what type of doctor is best to perform this delicate surgery. Any suggestions? I see pictures of famous people with this mild condition and wonder why they have not had a surgery to correct it. Is it that complicated and difficult to get right?
ReplyDeleteAre you seeing a pediatric ophthalmologist? That's where you start and they make referrals to a surgeon who specializes. Please join the Yahoo Group about ptosis. I posted about it on the main page. In this case it may be as simple as tightening the muscle that raises the eyelid.
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