Jan 21, 2009

Ptosis Surgery Update

As I'm sure you've noticed, Ainlsey has droopy eyelids, a condition called ptosis, as well as a downward slant to her eyes. These conditions were present at birth but to a lesser degree and worsened after her second cranial reconstruction when she was 9 months old. In December we followed up with Ainsley's ophthalmologist (and surgeon.) For the details of that appointment see my prior blog post: http://ainsleyrae.blogspot.com/2008/12/eye-appointment-ptosis-follow-up.html A few weeks later we met with Ainsley's cranio-facial plastic surgeon. Unlike the eye doctor who was not sure, he thought there should be enough brow bone to anchor the frontalis sling to. However, when asked, he suggested a second opinion with another eye plastic surgeon that he works with on complex cases like Ainsley's.

We were fortunate that the second surgeon had a cancellation and we were able to get in to be seen today. This issue has been on my mind, especially after the recent follow-up appointments, so I was thankful to be able to meet with him in order to get clarity in my mind of how this was going to play out down the road. We were warned that he does a lot of plastics work and not to let that put us off. I admit after viewing his website http://www.allurecosmeticsurgery.com/aboutdrsires.html I was a bit concerned. The idea of taking my daughter to a surgeon whose specialty seems to be reversing the aging appearance of older ladies left me a bit uncomfortable. The fact that he was listed as one of the best doctors in America and the Seattle area helped ease my mind as I prepared myself mentally for this appointment. Since the appointment was made, we went, and I'm glad we did. He was knowledgeable, personable and professional. And he had a different idea of how to help Ainsley.

This surgeon suggested cutting the tarsus in half and re-using that tissue to "prop up" the corners of her lower lids along with canthopexies (tightening of the lateral canthal tendons) . He calls it a tarsal switch procedure. He thinks it is less likely to fail over time than the frontalis sling operation. The eye pretty much reaches mature size sometime between ages 3-4. So he said he could perform the surgery any time after her 3rd birthday. The other surgeon wanted to wait until she was 4-5 years of age (if there was enough bone, if not then later). I am pleased at the idea of doing the surgery sooner rather than later. However, the first surgeon cautioned against any surgeon who would be willing to operate sooner. I'm not sure where this leaves us. I do believe the first surgeon also mentioned surgery to the tarsus as a possibility depending on what muscle is there, but that was long ago, as he seems to believe the sling is the way to go. Perhaps we should discuss it with him although he did not want to see Ainsley for a year.

When the first surgeon saw Ainsley at birth and said he was not worried about her eyes, that he could make them look normal, I clung to that. Clearly it is not as easy as he made it sound. At least now it seems as though we will not have to wait to do surgery until potentially Ainsley had a brow prosthetic at age 8. That is a relief. That would have been just too long to wait. The second surgeon said her eyes may not look as "open" as ours even after the surgery. And since her eyes are somewhat wide set that her eyes will always have a slightly different appearance. Her eyes will probably not ever look completely normal. Of course the first surgeon would agree. I'm finally coming to realize that it would be best if I just expect that her eyes will never look "normal". No room for disappointment that way. Although I'd love to be proven wrong. Mostly I hope they can make enough of an improvement that she doesn't have to work so hard to lift her lids. That we can see her eyes more so we can read her emotions and comprehension more easily. And that strangers will stop commenting on how sleepy she looks when we are out and about. No matter what she will always be beautiful to me.


  1. Oh Susan,

    Ainsley is beautiful, and
    to be quite honest with you I didn't even know there was anything wrong with her eyes until you told me in one our threads on the trach forum.

    She is Ainsley, beautiful in every way!


  2. Isn't it a little frustrating when you get two very different opinions on surgical procedures? Oye.

    Btw, Ainsley is absolutely gorgeous and she looks like she has a heart of gold. :o)

  3. Hi there! I came across your site while searching for information on ptosis following surgery to correct craniosynostosis. My dauther had cranio surgery a week ago and even though the swelling is gone, only one eye is open while the other "droops". I am really hoping it's not ptosis but wondering why we (the parents) are not warned that this is a possibility!?
    Anyhow, I have flipped through some of your other posts and I just have to say that Ainsley is one amazing little girl, and so stinkin cute! She has come a long way, you must be so proud of her!