I get occasional visitors to my other blog (I can see you!) who are in search of information on ptosis. My son was either born with (congenital ptosis) the condition or got it through birth trauma. Ptosis, for those who don't know, is a weak or undeveloped eyelid muscle. My son has this in his left eyelid. He's had one surgery after the age of 1 using a silicone sling to have his eyebrow do most of the work lifting the lid.
We went into this with full knowledge that he will need another surgery (or more). The second one will use fascia lata--tissue harvested from my son's leg. We get varying comments on when this will occur--sometimes we hear between ages 3 and 4, sometimes between ages 4 and 5.
The first surgery resulted in another problem: Our son's eyelid was now higher (though not really even with the other eye--but it unexpectedly turned inward, a condition called entropion. Also, we must apply a liquid tear solution to his eye before nap and nighttime sleep because the eyelid does not close completely.
The other problem we are dealing with now is the eye with the weak lid will sometimes cross. This is not actual crossed-eyes, we are told, because the eyes are still tracking together. Instead this condition is supposed to be him compensating for a farsightedness that, we are told, will be fixed by glasses. The condition comes and goes, sometimes lingering off and one for a few days and then not reappearing for weeks.
There are other issues like his tendency to close the weak eyelid completely in the sun. And, of course, the biggest issue is any form of social stigma. Our son is very recently in a parents' day out program so we are about to discover what this is truly like.
This is all a way of saying I hope others with children who have congenital ptosis will find this location and exchange their own experiences. Doctors can surely chime in and correct any errors they see here--I am just related my personal experiences and viewpoints. If you stopped here by going to a search engine, please leave a comment. Tell us your story. We'd love to compare notes...
Long time since you posted this and wondering how your son is doing now? I have a 31 yr old son who was born with ptosis in both eyes and had 9 ops and we seemed to acquire more problems along the way. If you wish to contact me my email is belblac@aol.com. Ty
ReplyDeleteI'm glad to hear that you were able to get an operation for your son as early as 1 year old. I was unable to begin operations until I was almost 3 years old, resulting in near loss of sight in my left eye (I'll likely have to look into getting Lasik down the line). I ended up having five surgeries between the ages of 2 and 14: the first three were with a synthetic (silicone?) sling, the last two involving a fascia lata sling from a matched donor. Luckily, you seem to have been able to acquire interventions early on, and hopefully this means his vision problems will be minimal.
ReplyDeleteYou mentioned having some concerns about him closing his weak eye in sunlight…I find that I do that too. I'm no expert, but really I think it's just a reflex. Most people squint in direct sunlight, people with ptosis just don't have the muscle strength to keep the weak eye open when they squint. My solution is to just bring sunglasses with me where ever I go.
As far as the concern with social stigma, I will tell you that you are very fortunate that he is a boy with this condition. As a girl growing up with ptosis, I was extremely self-conscious at all times about my condition. It was, and still sometimes is, especially noticeable when I had to put on makeup. Symmetry is one of the most basic factors that constitute perceptions of beauty, and I was always painfully aware of it. With a boy, maybe the obsession with appearance will be less.